A look back at VASCERN Days 2019

eHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>

VASCERN News

14 September 2023

Vascular Anomalies Working Group (VASCA-WG) CPMS Case Discussion

VASCERN News

08 September 2023

Patient-Centered HTAD Quality Measures Now Online!

EU calls

05 September 2023

Call for proposals: Establishing novel approaches to improve clinical trials for rare and ultra-rare diseases

VASCERN News

05 September 2023

Introducing our new e-learning course on Hereditary Hemorrhagic Telangiectasia (HHT)

VASCERN News

04 September 2023

Latest Updates on the VASCERN Registry Project

VASCERN News

31 August 2023

Exciting New Pill of Knowledge Videos on Pregnancy and Lymphedema

VASCERN News

31 July 2023

Vascular Ehlers Danlos Syndrome (vEDS) Q&A Webinar Replay Now Available on YouTube!

VASCERN News

26 July 2023

VASCERN European Patient Advocacy Group (ePAG) Elects New Co-Chairs

VASCERN News

07 July 2023

New Updates on the VASCERN Website: Introducing the EU Trainings Page

Ethical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Registries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>ePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Implementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Research: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>VASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Communication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>VASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Welcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>List of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–><\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>\n
Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).<\/p>\n\n
$\"\"$ <\/p>\n\n
Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>\n
\n
An update of VASCERN’s EU co-funding projects<\/li>\n
The monitoring indicators that were sent to the European Commission for our network in October<\/li>\n
VASCERN’s enlargement plans and cooperation with other ERNs, introducing the affiliated partners that have applied to VASCERN and discussing the call for new HCP Full Members to join the existing 24 ERNs. See the presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
$\"\"$ <\/p>\n
An overview of VASCERN’s communication and dissemination activities was given by Natasha Barr, VASCERN Project Officer, that showcased the significant increase this year in website views and followers on our various social media networks. See the presentation <\/strong>here<\/strong><\/a>.<\/strong> $\"\"$ <\/a><\/p>\n
This was followed by an interesting presentation by Yanis Mimouni, <\/strong>European Joint Pogramme on Rare Diseases (EJP-RD) project manager, on the goals and the various pillars of the EJP-RD, along with the numerous opportunities for ERN members (including the EJP RD Joint Transnational Call (JTC) 2020<\/strong><\/a>). See the full presentation here<\/a><\/strong>.<\/p>\n\n
$\"\"$ <\/a><\/p>\n
After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).<\/p>\n\n
$\"\"$ <\/p>\n\n
Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Additional topics she covered included:<\/strong><\/p>\n\n
\n
An update of VASCERN’s EU co-funding projects<\/li>\n
The monitoring indicators that were sent to the European Commission for our network in October<\/li>\n
VASCERN’s enlargement plans and cooperation with other ERNs, introducing the affiliated partners that have applied to VASCERN and discussing the call for new HCP Full Members to join the existing 24 ERNs. See the presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
$\"\"$ <\/p>\n
An overview of VASCERN’s communication and dissemination activities was given by Natasha Barr, VASCERN Project Officer, that showcased the significant increase this year in website views and followers on our various social media networks. See the presentation <\/strong>here<\/strong><\/a>.<\/strong> $\"\"$ <\/a><\/p>\n
This was followed by an interesting presentation by Yanis Mimouni, <\/strong>European Joint Pogramme on Rare Diseases (EJP-RD) project manager, on the goals and the various pillars of the EJP-RD, along with the numerous opportunities for ERN members (including the EJP RD Joint Transnational Call (JTC) 2020<\/strong><\/a>). See the full presentation here<\/a><\/strong>.<\/p>\n\n
$\"\"$ <\/a><\/p>\n
After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).<\/p>\n\n
$\"\"$ <\/p>\n\n
Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>Marine Hurard, VASCERN Project Manager, then commenced the Board by delving into the Terms of Reference (ToR)<\/strong> to be updated and approved by our Board. VASCERN’s authorship guidelines<\/a>, event endorsement agreement and rules for exclusion from our network were also reiterated and any questions or comments were managed before the ToR were formally approved. See the ToR presentation here.<\/a><\/strong><\/p>\n
\n\nAdditional topics she covered included:<\/strong><\/p>\n\n
\n
An update of VASCERN’s EU co-funding projects<\/li>\n
The monitoring indicators that were sent to the European Commission for our network in October<\/li>\n
VASCERN’s enlargement plans and cooperation with other ERNs, introducing the affiliated partners that have applied to VASCERN and discussing the call for new HCP Full Members to join the existing 24 ERNs. See the presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
$\"\"$ <\/p>\n
An overview of VASCERN’s communication and dissemination activities was given by Natasha Barr, VASCERN Project Officer, that showcased the significant increase this year in website views and followers on our various social media networks. See the presentation <\/strong>here<\/strong><\/a>.<\/strong> $\"\"$ <\/a><\/p>\n
This was followed by an interesting presentation by Yanis Mimouni, <\/strong>European Joint Pogramme on Rare Diseases (EJP-RD) project manager, on the goals and the various pillars of the EJP-RD, along with the numerous opportunities for ERN members (including the EJP RD Joint Transnational Call (JTC) 2020<\/strong><\/a>). See the full presentation here<\/a><\/strong>.<\/p>\n\n
$\"\"$ <\/a><\/p>\n
After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).<\/p>\n\n
$\"\"$ <\/p>\n\n
Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>The first morning started with a welcome and introduction<\/strong><\/a> by VASCERN Coordinator, Prof. Guillaume Jondeau, where our members (healthcare professionals and patient advocates) were all warmly welcomed and the various stakeholders introduced. We were also lucky to be able to introduce the representatives from 4 of our new Affiliated Partners from Austria, Malta, Spain and Slovenia, attending their first VASCERN Days!<\/p>\n
$\"\"$ <\/a><\/p>\n
\n\nMarine Hurard, VASCERN Project Manager, then commenced the Board by delving into the Terms of Reference (ToR)<\/strong> to be updated and approved by our Board. VASCERN’s authorship guidelines<\/a>, event endorsement agreement and rules for exclusion from our network were also reiterated and any questions or comments were managed before the ToR were formally approved. See the ToR presentation here.<\/a><\/strong><\/p>\n
\n\nAdditional topics she covered included:<\/strong><\/p>\n\n
\n
An update of VASCERN’s EU co-funding projects<\/li>\n
The monitoring indicators that were sent to the European Commission for our network in October<\/li>\n
VASCERN’s enlargement plans and cooperation with other ERNs, introducing the affiliated partners that have applied to VASCERN and discussing the call for new HCP Full Members to join the existing 24 ERNs. See the presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
$\"\"$ <\/p>\n
An overview of VASCERN’s communication and dissemination activities was given by Natasha Barr, VASCERN Project Officer, that showcased the significant increase this year in website views and followers on our various social media networks. See the presentation <\/strong>here<\/strong><\/a>.<\/strong> $\"\"$ <\/a><\/p>\n
This was followed by an interesting presentation by Yanis Mimouni, <\/strong>European Joint Pogramme on Rare Diseases (EJP-RD) project manager, on the goals and the various pillars of the EJP-RD, along with the numerous opportunities for ERN members (including the EJP RD Joint Transnational Call (JTC) 2020<\/strong><\/a>). See the full presentation here<\/a><\/strong>.<\/p>\n\n
$\"\"$ <\/a><\/p>\n
After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).<\/p>\n\n
$\"\"$ <\/p>\n\n
Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
\n
Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
\n
The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
\n
The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
$\"\"$ <\/a><\/p>\n
At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>\n\nThe first morning started with a welcome and introduction<\/strong><\/a> by VASCERN Coordinator, Prof. Guillaume Jondeau, where our members (healthcare professionals and patient advocates) were all warmly welcomed and the various stakeholders introduced. We were also lucky to be able to introduce the representatives from 4 of our new Affiliated Partners from Austria, Malta, Spain and Slovenia, attending their first VASCERN Days!<\/p>\n
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\n\nMarine Hurard, VASCERN Project Manager, then commenced the Board by delving into the Terms of Reference (ToR)<\/strong> to be updated and approved by our Board. VASCERN’s authorship guidelines<\/a>, event endorsement agreement and rules for exclusion from our network were also reiterated and any questions or comments were managed before the ToR were formally approved. See the ToR presentation here.<\/a><\/strong><\/p>\n
\n\nAdditional topics she covered included:<\/strong><\/p>\n\n
\n
An update of VASCERN’s EU co-funding projects<\/li>\n
The monitoring indicators that were sent to the European Commission for our network in October<\/li>\n
VASCERN’s enlargement plans and cooperation with other ERNs, introducing the affiliated partners that have applied to VASCERN and discussing the call for new HCP Full Members to join the existing 24 ERNs. See the presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
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An overview of VASCERN’s communication and dissemination activities was given by Natasha Barr, VASCERN Project Officer, that showcased the significant increase this year in website views and followers on our various social media networks. See the presentation <\/strong>here<\/strong><\/a>.<\/strong> $\"\"$ <\/a><\/p>\n
This was followed by an interesting presentation by Yanis Mimouni, <\/strong>European Joint Pogramme on Rare Diseases (EJP-RD) project manager, on the goals and the various pillars of the EJP-RD, along with the numerous opportunities for ERN members (including the EJP RD Joint Transnational Call (JTC) 2020<\/strong><\/a>). See the full presentation here<\/a><\/strong>.<\/p>\n\n
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After enjoying a quick coffee break, that allowed for numerous networking opportunities, the group returned to the plenary session to listen to the five Rare Disease Working Group (RDWG) Chairs for a session moderated by Marine Hurard about the implementation of our Work Packages (WPs).<\/p>\n\n
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Prof. Ulrich Sure (representing Claire Shovlin as Hereditary Hemorrhagic Telangiectasia (HHT) WG<\/a> Chair), Prof. Julie De Backer (Heritable Thoracic Aortic Disease (HTAD) WG<\/a> Chair), Dr. Leema Robert (Medium-Sized Arteries (MSA)-WG<\/a> Chair), Dr. Robert Damstra (Pediatric and Primary Lymphedema (PPL) WG<\/a> Chair), and Prof. Miikka Vikkula (Vascular Anomalies (VASCA) WG<\/a> Chair) all gave their group’s progress updates on the 15 WPs. See the slides on VASCERN’s WP implementation <\/strong>here<\/strong><\/a><\/p>\n
This was followed by:<\/strong><\/p>\n\n
\n
European Patient Advocacy Group (ePAG) <\/strong>Chair, Juergen Grunert, presenting the aims of the ePAG, their acheivements to date and their expectations as we move forward. See the presentation here<\/a><\/strong>.<\/a><\/li>\n<\/ul>\n\n
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<\/p>\n
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A brief update on the restructuration of VASCERN’s transversal working groups (e.g. Registry, Ethics). It was decided by the board, after a reevaluation<\/strong> of needs, that some groups were no longer really necessary, while some were to be reactivated. Information on VASCERN’s transversal working groups (and their members) will be updated on the website shortly.<\/li>\n<\/ul>\n
<\/p>\n
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Update by by Leo Schultze Kool, Registry Working Group Chair, who presented the VASCERN registry project and the steps ahead for all of the RDWGs now that the registry proposal has been submitted. See the presentation <\/strong>here<\/strong><\/a><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
\n
Ethical and Legal issues<\/strong> by Romain Alderweireldt, our Ethics Working Group Chair. Please note that this presentation was not given during VASCERN Days 2019 but you can see the slides here<\/a><\/strong>.<\/em><\/li>\n<\/ul>\n
<\/p>\n
\n
A talk by Dr. Alessandro Pini (VASCERN Mobile App Advisor) & Raffaella Gaetano about the VASCERN app<\/a> and how the new version 2 (currently in development) will be multilingual and include even more healthcare providers (including the new affiliated partners) and patient organisations in Europe. See presentation here<\/a>.<\/strong><\/li>\n<\/ul>\n
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$\"\"$ <\/a><\/p>\n
<\/p>\n
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The latest Clinical Patient Management System (CPMS) developments<\/a>, by Caroline Paquier (European commission – DG Health<\/a>) and Hany Mina (OpenApp<\/a>), including the resolution of many issues brought up by our members (and followed up by our IT Helpdesk & End User Support Specialist, Ibrahim Donmez) and other improvements made to the system by the team. See the presentation <\/strong>here<\/strong><\/a>.<\/strong><\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
After lunch, the RDWGs split up into their respective groups in order to start working on their ongoing projects.<\/p>\n
<\/p>\n
This session lasted for the rest of the afternoon and much work was done by everyone.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
The first day of the seminar concluded with an hour long ePAG meeting<\/strong>, where 10 patient advocates, in addition to Ines Hernando (Eurordis)<\/a>, examined the patient advocate’s role in the integration of the ERNs into the national healthcare systems. They also approved the idea of the creation of a patient-centered Instagram account<\/strong> and briefly the creation of \”patient journeys<\/strong>\”. The healthcare professionals in the various RDWGs used this last hour to discuss complex patient cases<\/strong> using the CPMS.<\/p>\n
<\/p>\n
Day two <\/strong>commenced with an hour long session in the plenary where each RDWG chose a topic for the sharing of best practices and ideas with the rest of our network. Many topics were discussed, including:<\/p>\n
<\/p>\n
\n
A lively debate about the challenges of producing clinical guidelines and how consensus statements can be made while awaiting more evidence-based data or to avoid conflicting with international guidelines.<\/li>\n
Various ideas for European patient passports, educational materials and “tweetorials”<\/li>\n
The invitation of non-VASCERN members to live events and the accreditation of activities\/educational events<\/li>\n
Clinic visits during Face to face meetings (as was done by the PPL WG) and their added value to clinicians<\/li>\n<\/ul>\n
<\/p>\n
Next, the RDWGs gathered into their individual groups before the PPL and VASCA WGs and the MSA and HTAD WGs groups joined together for their interRDWG sesions<\/strong>:<\/p>\n
<\/p>\n
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The VASCA and PPL WGs used this time to review the classification of the vascular anomalies and primary lymphedema with Houda Ali, from Orphanet<\/a>. They also had a special presentation on Magnetic Resonance Lymphangiography (MRL) by Dr. Willemijn Klein (VASCA WG member), that was of great interest to all.<\/li>\n<\/ul>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
<\/p>\n
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The MSA and HTAD WGs used this time together to discuss the evaluation tool being prepared (including a review of the data items) to evaluate the vascular Ehlers-Danlos and HTAD patient pathways. All centers in MSA and HTAD will use this tool in order to start data collection in January 2020.<\/li>\n<\/ul>\n
<\/p>\n
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The HHT WG did not interact with another RDWG but spent the day reviewing and learning from the complex clinical cases previously discussed and updates on the patient’s health status, when available. This was done by the group for learning purposes and to collect information for a possible consensus document.<\/li>\n<\/ul>\n
<\/p>\n
After lunch the RDWGs returned to their individual groups to continue and finalise the work already started.<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
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At the end of the day, all members assembled in the plenary and the 5 RDWG Chairs had a chance to debrief on the work acheived over the last two days and to look forward to the opportunities ahead. Notable achievements included<\/strong>:<\/p>\n
<\/p>\n
\n
HHT:<\/strong> Had an informative presentation on cerebral AVMs by Ulrich Sure. Good discussions from the review of cases (covering many issues including angiogenics, pulmonary AVMs etc.) and the different methods of management were debated. All cases represented complex cases where the HHT leads had reached consensus so were good for learning experience. It was mentioned that the presence of the patient advocates was beneficial in pointing out that there are certain topics that more relevant to some and not to others on a national level (ex: pre-implantation genetic diagnosis).<\/li>\n
HTAD:<\/strong> Dr. Arturo Evangelista gave a presentation on imaging techniques for measuring the aorta, the items of the HTAD registry were discussed, case discussions were had (and it was requested to have more time for case discussions next year), Loeys-Dietz syndrome (LDS) Do’s and Don’ts factsheets are under review, survey results of the clinical outcome measures prepared by patient advocates from assessed centers were examined.<\/li>\n
MSA WG:<\/strong> Discussion of the possibility of producing webinars and tweetorials (where a brief lesson on a given topic is delivered in a series of tweets) for various topics of vascular Ehlers-Danlos syndrome.<\/li>\n
PPL<\/strong>: Finalization of their general pathway on primary and pediatric lymphedema (now published on our website here<\/a>). They also validated a new Pill of Knowledge (PoK) video of a patient testimony made by ANDLinfa (soon to be published).<\/li>\n
VASCA WG<\/strong>: Finalization of the review and validation of 3 new PoK videos produced by HEVAS by the group (soon to be released), discussion on the registry project, Dr. Willemijn Klein gave a presentation Magnetic resonance lymphangiography (MRL) and more interactions are expected with the PPL WG on this topic. The Orphanet classification for vascular anomalies was worked on. The lymphatic malformation patient pathway was extensively reviewed.<\/li>\n<\/ul>\n
<\/p>\n
Networking<\/strong><\/p>\n
<\/p>\n
$\"\"$ <\/a><\/p>\n
Luckily the packed 2-day schedule was broken up by numerous networking opportunities during the coffee and lunch breaks. At the end of the first day, VASCERN’s members all enjoyed a meal together in the evening and we even managed to take a quick picture at La<\/em> Grand<\/em>–Place<\/em> for a souvenir!<\/p>\n
<\/p>\n
The VASCERN Coordination Project-Team<\/a> would like to once again thank all of our members and invited guests for making VASCERN Days 2019 another successful seminar. The two days of brainstorming, interesting debates and fruitful working group sessions have once again allowed us to look to the future and continue to work with determination and enthusiasm for all rare vascular diseases patients.<\/p>\n
<\/p>\n
We would equally like to thank everyone who actively followed us (and tweeted) throughout our annual seminar using the hashtag #VASCERNDays2019! You can see the Twitter moment here<\/strong><\/a><\/p>\n
<\/p>\n
We look forward to seeing you next year!<\/p>\n
<\/p>\n
$\"\"$ <\/a><\/h5>\n
[\/vc_column_text][vc_row_inner][vc_column_inner][vc_column_text]Read the full programme <\/strong>here<\/strong><\/a><\/p>\n
\n\nList of available presentations:<\/strong><\/p>\n
\n\nWelcoming words<\/a> <\/strong>(Guillaume Jondeau) <\/em><\/p>\n
\n\nVASCERN’s Terms of Reference<\/a>:<\/strong> update and approval (Marine Hurard) <\/em><\/p>\n
\n\nCommunication and dissemination<\/a><\/strong> (Natasha Barr) <\/em><\/p>\n
\n\nVASCERN’s enlargement & cooperation<\/a> <\/strong>New Affiliated Partners 2019, Call for new HCP Full Membership 2019, interERN cooperation, Brexit (Marine Hurard, Guillaume Jondeau) <\/em><\/p>\n
\n\nResearch: EJP-RD<\/a>,<\/strong> including Q&A (Yanis Mimouni)<\/em><\/p>\n
\n\nImplementation of Work Packages<\/a> <\/strong>(discussion with the RDWG Chairs)<\/em><\/p>\n
\n\nePAG feedback and new developments<\/a>, <\/strong>including Q&A (Juergen Grunert)<\/em><\/p>\n
\n\nRegistries<\/a> <\/strong>(Leo Schultze Kool)<\/em><\/p>\n
\n\nEthical and Legal issues<\/a> <\/strong>(Romain <\/em>Alderweireldt)<\/em><\/p>\n
\n\neHealth: Mobile App version 2<\/a> <\/strong>(Raffaella Gaetano, Alessandro Pini)<\/em><\/p>\n
\n\nClinical Patient Management System (CPMS)<\/a> <\/strong>(Caroline Paquier, Hany Mina) <\/em><\/p>\n
<\/p>\n
Selection of photos of the event can be found below:<\/h5>\n
[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column width=\”1\/6\”][\/vc_column][vc_column width=\”4\/6\”][vc_gallery interval=\”3\” images=\”9294,9296,9295,9298,9297,9292,9291,9290,9287,9284,9283,9282,9276,9270,9269,9268,9266,9265,9264,9263,9261,9260,9259,9258,9256,9271,9293,9300,9301,9252,9250,9249,9248,9246,9245,9244,9243,9242,9241,9240,9239,9237,9232,9231,9230,9229,9228,9288,9289,9227,9275,9278,9280,9110,9083,9274,9267,9299,9238,9253\” img_size=\”large\”][\/vc_column][vc_column width=\”1\/6\”][\/vc_column][\/vc_row]<\/p>“, “_texte”: “field_5faac9737bcbe”, “nombre_de_colonnes”: “1”, “_nombre_de_colonnes”: “field_5faacbaaef3ee”, “margin_haut”: “1”, “_margin_haut”: “field_61d8683074773”, “margin_haut_taille”: “u-padding-top”, “_margin_haut_taille”: “field_61d8692274775”, “margin_bas”: “1”, “_margin_bas”: “field_61d8688974774”, “margin_bas_taille”: “u-padding-bottom”, “_margin_bas_taille”: “field_61d869b774776”, “margin”: “”, “_margin”: “field_61d869e3ada86” }, “align”: “full”, “mode”: “auto”} /–>