• Wed
    08
    Jan
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will take place on January 8th, 2020 from 6 pm to 7 pm (Paris time).

  • Tue
    14
    Jan
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will take place on January 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    15
    Jan
    2020
    Sat
    18
    Jan
    2020
    Paris, France

    The European Days of the French Society of Cardiology will be held at the Palais des Congrès in Paris from January 15-18th, 2020.

    Both Professor Guillaume Jondeau (VASCERN coordinator) and Professor Julie De Backer (Heritable Thoracic Aortic Diseases (HTAD) Working Group Chair) will be speaking at this event about aortic risk in Marfan Syndrome, monitoring of aortic dilatation in pregnant women with cardiovascular diseases, risk of aortic dissection during pregnancy and more! Assomarfans will also have an information booth at this event to raise awareness for Marfan disease.

    For all information on this event, including the programme, click here

  • Wed
    15
    Jan
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on January 15th, 2020 from 3:45 pm to 5 pm (Paris time).

  • Mon
    20
    Jan
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on January 20th, 2020 from 5:30 pm to 6:30 pm (Paris time).

  • Wed
    22
    Jan
    2020
    Sat
    25
    Jan
    2020
    Torino, Italy

    The 23rd Conference on Immune Pathologies and Rare Diseases, organised by C.M.I.D. (Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare) will take place from January 22-25th, 2020 in Torino Italy.

    Pernille Henriksen, ePAG co-Chair for the Pediatric and Primary Lymphedema (PPL-WG), and Elena Matta (ePAG patient advocate for PPL) will be in attendance at this event where they will be representing patients with primary lymphedema. Pernille will be speaking at a session on night time compression and workshops on primary lymphedema for patients and professionals will take place at this event.

    See the preliminary programme here

  • Mon
    27
    Jan
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on January 27th, 2020 from 5 pm to 6 pm (Paris time).

  • Mon
    27
    Jan
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #34 will take place on January 27th, 2020 at 8 am (Paris time).

  • Sat
    01
    Feb
    2020
    Sat
    29
    Feb
    2020
    Worldwide

    February is Marfan Awareness Month, a time for all of us in the community to escalate our efforts to increase Marfan awareness.

    This year, the Marfan Foundation hopes you will join them in the #MarfanVictoryChallenge.

    "The idea is to spread the word about Marfan syndrome – through social media; through community events, such as educational events or fundraisers at work, school, or other community settings; or through legislative activities, such as getting a local proclamation for Marfan Awareness Month."

    More information on the Marfan Foundation website.

  • Wed
    05
    Feb
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will take place on February 5th, 2020 at 6 pm (Paris time).

  • Tue
    11
    Feb
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on February 11th, 2020 from 10 am to 11:30 am (Paris time).

  • Mon
    17
    Feb
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on February 17th, 2020 at 5:30 pm (Paris time).

  • Tue
    18
    Feb
    2020
    Brussels, Belgium

    The EURORDIS Black Pearl Awards will take place in Brussels, Belgium on February 18th, 2020.

    This annual event recognises the outstanding achievements and exceptional work of people making a difference for the rare disease community, such as Claudia Crocione, our European Patient Advocacy Group (ePAG) Co-Chair for Hereditary hemorrhagic telangiectasia (HHT), who will be recognised with the EURORDIS Volunteer Award!

    More information on this event here

  • Wed
    19
    Feb
    2020
    Brussels, Belgium

    The 29th EURORDIS Round Table of Companies Workshop will take place on February 19th, 2020 in Brussels, Belgium. It will be a full-day workshop dedicated to the topic of medicines’ repurposing.

    To register and for more information on this event, click here

  • Wed
    19
    Feb
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will be taking place on February 19th, 2020 from 3:45 pm to 5 pm (Paris time).

  • Wed
    19
    Feb
    2020
    5:30PM-7:00PM (CET)Videoconference call - Webex

    The 9th VASCERN Council Meeting will take place on February 19th, 2020 from 5:30 pm to 7 pm (Paris time).

  • Thu
    20
    Feb
    2020
    11:00AM-12:00PM (CET)Videoconference call - Webex

    The first meeting of the Knowledge Generation Working Group of 2020 will be held on February 20th, 2020 at 11 am.

  • Mon
    24
    Feb
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will be taking place on February 24th, 2020 from 5 pm to 6 pm (Paris time).

  • Fri
    28
    Feb
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #35 will take place on February 28th, 2020 at 8 am (Paris time).

  • Sat
    29
    Feb
    2020
    Worldwide

    Rare Disease Day Poster

    The 13th edition of the Rare Disease Day will be held on February 29th, 2020 worldwide!

    For this international day initiated by EURORDIS - European Rare Diseases Organisation, the French networks for rare diseases (including FAVA-multi) will be reaching out to the general public by organising various events to raise awareness in cities across France. VASCERN will attend their event happening in Paris, along with several other ERNs coordinated in Paris (including EuroBloodNet and ERN ITHACA)...more details to follow!

    The communications material for Rare Disease day is available on here.

  • Wed
    04
    Mar
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on March 4th, 2020 at 6 pm (Paris time).

  • Fri
    06
    Mar
    2020
    Worldwide

    World Lymphedema Day 2020 will take place on March 6th, 2020.

    This annual advocate-driven celebration aims to raise awaresness for all types of lymphatic diseases, primary and secondary lymphedema, lipedema, lymphatic filariasis, lymphatic malformations, and the full lymphatic continuum of diseases impacted by the lymphatic system.

    In preparation of this international event, the patient advocates of our European Patient Advocacy Group (ePAG) for Pediatric and Primary Lymphedema (PPL) have created various important documents, including:

    More information on the World Lymphedema Day website here.

  • Tue
    10
    Mar
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on March 10th, 2020 from 10 am to 11:30 am (Paris time).

  • Mon
    16
    Mar
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on March 16th, 2020 from 5:30 pm to 6:30 pm (Paris time).

  • Fri
    20
    Mar
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #36 will take place on March 20th, 2020 at 8 am (Paris time).

  • Tue
    31
    Mar
    2020
    Videoconference call - Webex

    The 7th ERN IT Advisory Group Meeting will take place online on Tuesday March 31st, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

  • Tue
    14
    Apr
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on April 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    15
    Apr
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on April 15th, 2020 at 3:45 pm (Paris time).

  • Mon
    20
    Apr
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on April 20th, 2020 at 5:30 pm (Paris time).

  • Mon
    27
    Apr
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on April 27th, 2020 at 5 pm (Paris time).

  • Tue
    28
    Apr
    2020
    Wed
    29
    Apr
    2020
    9:00AM-13:00PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN VASCA-WG Meeting will now take place online. There will be NO on-site event in Brussels. The meeting will occur from April 28th to 29th, 2020 from 9 am to 13 pm (Paris time).

  • Tue
    12
    May
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on May 12th, 2020 from 10 am to 11:30 am (Paris time).

  • Thu
    14
    May
    2020
    Fri
    15
    May
    2020
    Videoconference

    Due to the COVID-19 novel coronavirus pandemic, the International Society for the Study of Vascular Anomalies (ISSVA) 23rd Workshop for the Study of Vascular Anomalies, that was scheduled to take place in Vancouver, British Columbia, Canada from May 12-15, 2020 has been postponed by two full years, to 10-13 May 2022

    In place of an in-person meeting in 2020, there will be an ISSVA Online Workshop on the Thursday and Friday of the original meeting dates: 14-15 May 2020!

    The Scientific Program will be based on the in-person meeting's program and will be a venue to present the latest advances in research and science in vascular anomalies. ISSVA Online will provide a multidisciplinary forum for many specialties including - but not limited to - interventional radiologists, dermatologists, plastic surgeons, ENT surgeons, oncologists, pediatricians, pediatric surgeons, and pathologists.

    Members of the Vascular Anomalies (VASCA) Working Group will attend this online event and various posters by the group will be presented.

    Click here to register.

    If you have already registered for the ISSVA 2020 (Vancouver) in person meeting, you can transfer your registration fees to the ISSVA Online Workshop by using the below survey: Transfer your ISSVA 2020 (Vancouver) Registration to the Online Workshop.

    More information on the ISSVA Online Workshop here.

  • Thu
    14
    May
    2020
    Fri
    15
    May
    2020
    100% Online

    In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE from May 14th to 15th, 2020. There will be NO on-site event in Stockholm. 

    More information here.

    ECRD is a biennial event that has allowed the rare disease community to gather since 2001 to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and empower the rare disease community to drive change where it is needed most. Outputs from these conferences have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.

    The overarching theme for this conference is The rare disease patient journey in 2030. 

    The European Joint Programme on Rare Diseases serves as official partner of the conference and VASCERN is proud to be an Associate Partner of this event.

    Submissions for poster abstracts are open until February 10th, 2020. More information here.

    Applications for the Patient Advocate Fellowship Programme are open until December 2nd, 2019. More information here.

    For more information on this event, take a look at the official ECRD website or the ECRD LinkedIn page.

  • Thu
    14
    May
    2020
    5:30PM-7:00PM (CET)Videoconference call - Webex

    VASCERN will hold a webinar on Thursday May 14, 2020 from 5:30-7pm CET on Heritable Thoracic Aortic Diseases (HTAD) and Covid-19.

    This webinar features a brief introduction on COVID-19 and the cardiovascular system, followed by a Q&A session!

    Elena De Moya Rubio (ePAG Co-Chair for HTAD) and Françoise Steinbach (ePAG Deputy Co-Chair for HTAD) will ask the questions provided by HTAD patients (collected by Elena) and they will be answered by HTAD WG Chair and Co-Chair, Prof. Julie De Backer and Prof. Guillaume Jondeau.

    The webinar will take place on the WebEx platform. To receive the WebEx link to connect to the webinar (or to receive the recording), please register below:

    VASCERN webinar: HTAD and COVID-19 - Q&A session

    Please note all personal data collected will only be used to send the links and will be deleted after the webinar.

  • Mon
    18
    May
    2020
    Tue
    19
    May
    2020
    Online

    The Rare Diseases International (RDI) 6th Annual Meeting will be hosted completely online from May 18th to 19th, 2020. This event will bring together rare disease patient organisations from Latin America, North America, Europe, Asia and Africa to learn from each other and carry the voice of patients from their disease areas, countries and regions.

    For more information on this event and to see the programme, click here.

  • Wed
    20
    May
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on May 20th, 2020 at 3:45 pm (Paris time).

  • Mon
    25
    May
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on May 25th, 2020 at 5 pm (Paris time).

  • Wed
    03
    Jun
    2020
    6:00PM-7:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on June 3rd, 2020 at 6 pm (Paris time).

  • Thu
    04
    Jun
    2020
    Fri
    05
    Jun
    2020
    Videoconference call - Webex

    Due to the COVID-19, the VASCERN PPL-WG Meeting will now take place online. There will be NO on-site event in Helsinki. The meeting will occur from June 4th to 5th, 2020 from 9 am to 12 pm (Paris time).

  • Tue
    09
    Jun
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on June 9th, 2020 from 10 am to 11:30 am (Paris time).

  • Tue
    09
    Jun
    2020
    11:00AM-12:00PM (CET)WebEX

    In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE has been organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat the patients with COVID-19.

    The webinar: "Impact of COVID 19 for people living with a Rare Disease" will take place on Tuesday, June 9th, 2020 from 11.00 – 12.00 CET and will feature speakers from EURORDIS (Inés Hernando, ERN and Healthcare Director and Sandra Courbier, Social Research Director). The results of the latest Rare Barometer Survey, "Rare disease patients' experience of COVID-19", will be presented!

    To join the webinar, click the following link: https://europaevent.webex.com/europaevent/onstage/g.php?MTID=ee90be256b3426dd2ef596106f27bdc45

    meeting ID (access code) (if requested): 956 694 201

    For agenda and more technical information on how to join, click the link here.

  • Fri
    12
    Jun
    2020
    9:00AM-12:30PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN HHT-WG Meeting will now take place online. The meeting will occur on June 12th, 2020 from 9 am to 12:30 pm (Paris time).

  • Mon
    15
    Jun
    2020
    6:30PM-8:00PM (CET)Videoconference call - Webex

    The Internal ERN Coordinator's Group Meeting will take place online on June 15th, 2020 at 6:30PM.

  • Wed
    17
    Jun
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on June 17th, 2020 at 3:45 pm (Paris time).

  • Wed
    17
    Jun
    2020
    9:00AM-12:30PM (CET)Videoconference call - Webex

    Professor Jondeau and Marine Hurard will be attending the ERN Coordinators Group Meeting, which will occur online on June 17th, 2020.

  • Thu
    18
    Jun
    2020
    4:30PM-6:00PM (CET)Zoom

    EURORDIS will organise a webinar on June 18th from 16.30 to 18.00 (CEST) to provide an opportunity to have a preliminary discussion on what are the data needs of the ERNs and how to progress towards a comprehensive ERN data strategy.

    The webinar is open to ePAG advocates, RD National Alliances and EU Federations, ERN Coordinators and Project Managers, Hospital Managers, European Commission and all interested in attending.

    Please register using the following link: https://us02web.zoom.us/webinar/register/WN_-cl6DH9lQLe-15MHOPJp0w 

  • Mon
    22
    Jun
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on June 22nd, 2020 at 5 pm (Paris time).

  • Thu
    25
    Jun
    2020
    2:00PM-5:00PM (CET)Videoconference call - Webex

    Due to the COVID-19, the VASCERN MSA-WG Meeting will now take place online. The meeting will occur on June 25th, 2020 from 2 pm to 5 pm (Paris time).

  • Fri
    26
    Jun
    2020
    9:00AM-1:30PM (CET)Videoconference call - Webex

    This year, the annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place online from 9AM-1:30PM on Friday June 26th, 2020.

    VASCERN Project manager, Marine Hurard, will give a short presentation on the latest VASCERN and ERN news and will answer any questions.

  • Mon
    06
    Jul
    2020
    3:30PM-4:30PMVideoconference call - Webex

    The 1st ERN Transversal Study Group on Pregnancy and Family Planning will take place on Monday July 6th, 2020 at 3:30PM CET.

    This new ERN Study Group will allow for the creation of strong synergies with already existing initiatives as well as promote a transversal approach to the important topic of pregnancy and family planning in all rare and complex diseases. Members of VASCERN (Professor Julie De Backer (HTAD WG Chair) and Doctor Leema Robert (MSA WG Chair)) will be in attendance at this event along with members from at least 18 other ERNs.

  • Thu
    09
    Jul
    2020
    2:30PM-3:30PM (CET)Videoconference call - Webex

    The VASCERN Registry WG Kick-Off Meeting will take place online on July 9th, 2020 at 2:30 pm (Paris time).

  • Tue
    14
    Jul
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on July 14th, 2020 from 10 am to 11:30 am (Paris time).

  • Wed
    15
    Jul
    2020
    Fri
    17
    Jul
    2020
    Kartause Ittingen, Warth

    The 8th Rare Diseases Summer School organized by radiz – Rare Disease Initiative Zurich, which will take place in the Kartause Ittingen, Warth (Canton Thurgau; close to Zurich) from July 15th to July 17th 2020.

    The Summer School will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants.
    A high faculty-to-student ratio will allow participants to optimally benefit from the varied expertise of the faculty.

    For more information, go to their website.

  • Wed
    15
    Jul
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on July 15th, 2020 at 3:45 pm (Paris time).

  • Wed
    15
    Jul
    2020
    9AM-1PM (CET)Videoconference call - Webex

    The ERN Project Managers Meeting (part 1 of 2) will take place on Wednesday July 15th, 2020 at 9AM. Marine Hurard, VASCERN Project Manager, will be in attendance at this event.

  • Thu
    16
    Jul
    2020
    9:30AM-2:10PM CETVideoconference call - Webex

    The 2020-2 CEF Telecom call virtual Info Day will take place on Thursday 16 July 2020 and will cover seven priorities of the 2020 CEF Telecom calls that opened on June 30th, 2020.

    Register here

    For agenda and more information, visit the event page here

  • Mon
    20
    Jul
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on July 20th, 2020 at 5:30 pm (Paris time).

  • Fri
    24
    Jul
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #38 will take place on July 24th, 2020 at 8 am (Paris time).

  • Wed
    19
    Aug
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on August 19th, 2020 at 3:45 pm (Paris time).

  • Mon
    24
    Aug
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on August 24th, 2020 at 5 pm (Paris time).

  • Tue
    25
    Aug
    2020
    Sat
    12
    Sep
    2020
    Online

    VASCERN has partnered with The Marfan Foundation to co-lead the upcoming online E3 International Summit: Educating, Empowering, and Enriching Our Community, which will run from Tuesday, August 25th – Saturday, September 12th, 2020 and will feature medical experts from all over the world on a variety of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz syndrome (LDS), vEDS (Vascular Ehlers-Danlos syndrome), and related conditions.

    CLICK HERE TO REGISTER NOW!

    Members of the Heritable Thoracic Aortic Diseases (HTAD) and Medium-Sized Arteries (MSA) Working Groups, along with other world renowned experts, will offer live online presentations and question and answer sessions. A selection of quality of life presentations will also be on the schedule in order to complement the medical information. In order to make this program accessible to a larger international audience, medical presentations will be available in six languages: English, Spanish, Italian, French, German, and Dutch.

    Highlights include:

    • The ABCs of Marfan in six different languages
    • Research talks that address recent breakthroughs and hope for the future
    • Several specialized talks on each of the following: Marfan, VEDS, Loeys-Dietz, Stickler Syndrome, and Heritable Thoracic Aortic Conditions
    • A focus on treating and coping with pain, with presentations on pain management, building resiliency, physical therapy, and medical marijuana
    • Presentations on pregnancy, foot and ankle pain, eye issues, dental concerns, lung issues, and more
    • Talks on topics that can enhance quality of life, such as the healing power of laughter, art therapy, and mental fortitude
    • Presentations that address children’s medical issues related to Marfan, VEDS, and Loeys-Dietz, as well as how to deal with your child’s school, anti-bullying techniques, and preparing your child for surgery
    • Opportunities to connect with other people in the worldwide community through the Summit app

     

    See the full agenda here

    For the latest information on this event, visit the event page on the Marfan Foundation website here

  • Sat
    29
    Aug
    2020
    Tue
    01
    Sep
    2020
    Online

    The European Society of Cardiology (ESC) Congress 2020 will take place online from August 29th to September 1st, 2020.

    For more information visit the event's website here.

  • Wed
    02
    Sep
    2020
    6:00PM-7:30PM (CET)Videoconference call - Webex

    The 11th VASCERN Council Meeting will take place on September 2nd, 2020 from 6 pm to 7:30 pm (Paris time).

  • Tue
    08
    Sep
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on September 8th, 2020 from 10 am to 11:30 am (Paris time).

  • Mon
    14
    Sep
    2020
    Fri
    18
    Sep
    2020
    Online

    The European Joint Programme on Rare Diseases (EJP RD)'s second General Assembly and Consortium meeting will take place from 14 to 18 September 2020. Due to Covid-19, the 2020 GA meeting will be held online.

  • Mon
    14
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on September 14th, 2020 at 5 pm (Paris time).

  • Wed
    16
    Sep
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on September 16th, 2020 at 3:45 pm (Paris time).

  • Fri
    18
    Sep
    2020
    5:00PM-5:30PM (CET)Videoconference call - Webex

    The VASCERN Council Meeting special VASCERN Days 2020 will take place online on September 18th, 2020 at 5 PM (CET).

  • Fri
    18
    Sep
    2020
    9:00AM-12:00PM (CET)Videoconference call - Webex

    The Joint brainstorming session of the ERN Board of Member States and ERN Coordinators Group will occur online on Friday September 18th, 2020 from 9 AM to 12 PM (CET).

  • Sat
    19
    Sep
    2020
    Sat
    26
    Sep
    2020
    Worldwide

    Aortic Dissection Awareness Week will take place from September 19-26, 2020 and is a week to raise awareness about aortic disease around the world. It is a day to create community for people who care about aortic disease, to celebrate survivors, and to share life-saving information in order to reach people who are at risk.

    Many events will be taking place around the world, such as a free virtual conference by the John Ritter Foundation and the Genetic Aortic Disorders Association Canada- register here

    You can also raise your hands for Aortic Disease Awareness here

    For more information, follow the AD Awareness week Facebook page here

  • Mon
    21
    Sep
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on September 21st, 2020 at 5:30 pm (Paris time).

  • Tue
    22
    Sep
    2020
    12:00PM-17:25PM (CET)Adobe

    The European Medicines Agency (EMA) is organising a virtual workshop on benefit-risk of medicines used during pregnancy and breastfeeding on September 22nd, 2020 from 12 PM to 17:25 PM (CET).

  • Wed
    23
    Sep
    2020
    2:00PM-3:30PM (CET)Videoconference call - Webex

    The next inter-ERN Knowledge Generation Working Group Meeting will be held on September 23rd, 2020 from 2 PM to 3:30 PM (CET). Natasha Barr (VASCERN Project Officer) will be in attendance.

  • Thu
    24
    Sep
    2020
    2:00PM-5:00PM (CET)Videoconference call - Webex

    The ERNs Indicator Webinar will occur online on September 24th, 2020 from 2 PM to 5 PM (CET).

  • Mon
    28
    Sep
    2020

    The second European Joint Programme on Rare Diseases (EJP RD) Research Training Workshop Call is now open (from August 31st - September 28th, 2020)!

    The goal of the workshops is to train researchers and clinicians affiliated to ERN-Full  Members or Affiliated Partners in relevant topics on rare diseases research. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Providing a cross-ERN added value is highly desired.

    The workshops will be delivered as two-day events. Topics can be proposed by clinicians/investigators affiliated to ERN-institutions or EJP RD beneficiaries.  As of 2021, there will be two deadlines for workshop topic applications per year, in January and June.

    Topics will be selected taking into consideration several elements such as:

    • Addressing cross-cutting issues relevant for ERNs
    • Multidisciplinary topics
    • Fostering collaboration (within and between ERNs)
    • No overlap with other EJP RD training activities
    • Relevance of the topic for the ERN(s)
    • Benefits for the RD community
    • Appropriate training methodology

    The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. The costs for the workshop organization will be covered up to a limit of € 25,000.

    Applicants/Application profile:

    The applicant submitting workshop topics must fit one of the following:

    • Affiliated to any EJP RD beneficiary institution. The list of EJP RD beneficiary organizations can be found here 
    • Affiliated to an ERN full member. The list of full ERN members per country and per network can be found here
    • Affiliated to an ERN Affiliated Partner institution at the time when the application is submitted, as well as during the period of the execution of the workshop.

     

    Deadline to apply is September 28th, 2020

    For the full call text please click here

    More information on the call here

  • Mon
    28
    Sep
    2020
    Fri
    02
    Oct
    2020
    Online

    An international training course titled "International Summer School on Rare Disease Registries and FAIRification of Data”, Istituto Superiore di Sanità, Rome, Italy, will occur online from September 28th to October 2nd, 2020.

    This initiative is a part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD). For more information about the EJP RD, have a look here: https://www.ejprarediseases.org/

    The 5 days training course is composed of two modules, the first three days on Rare Disease Registries and the final two days on FAIRification of Data. You can attend a single training module or the entire training course.

    Online registration until July 19th, 2020: https://sondage.inserm.fr/index.php/257338/lang-en

    Programme and other information: https://www.ejprarediseases.org/wp-content/uploads/2020/06/EJP-RD_Summer-School-RD-RegistriesFAIRification.pdf

    Important dates, deadlines, and further information: https://www.ejprarediseases.org/index.php/international-summer-school-on-rare-disease-registries-and-fairification-of-data-2/

  • Mon
    28
    Sep
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on September 28th, 2020 at 5 pm (Paris time).

  • Tue
    06
    Oct
    2020
    10:30AM-12:00PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on October 6th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Thu
    08
    Oct
    2020
    Sat
    10
    Oct
    2020
    Online

    Registration is now open for the GenTAC Aortic Summit 2020, one of the premier meetings in the world focused on sharing knowledge and advancing research on genetic aortic disease!

    The meeting, which is specifically for scientists and clinicians, will be virtual, with presentations on-demand beginning September 29, 2020 and live discussions on October 8 and 10, 2020.

    The Call for Abstracts for the Aortic Summit is available as well. Abstracts for innovative research and clinical topics related to advancing therapeutic strategies and management should be submitted by September 11. Six abstracts will be chosen for live presentation on Thursday, October 8, from 7:30 - 8:30 pm, during our Cocktails and Posters session. All other abstracts will be available for viewing in our exhibit hall where questions and answers can be posted.

    The GenTAC Aortic Summit, a biennual event, originated in 2009 as part of the mission of the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Conditions (GenTAC). Its objective are to share current knowledge of the scientific underpinnings of genetic aortic disease; review current best practices related to diagnosis and treatment; and foster scientific and educational exchange.

    Professor Guillaume Jondeau (VASCERN coordinator) will give an update of the VASCERN registry during the "Registry Update" session on October 10th, 2020.

    For more information and to register for the GenTAC Aortic Summit 2020, please click here.

    For the full schedule please click here

    Please find the full announcement here

    If you have questions, please email GenTAC@marfan.org

     

     

     

     

  • Fri
    09
    Oct
    2020
    4:00PM-5:30PM (CEST)GoToMeeting

    The 2nd cross-ERN surgical based Working Group Meeting will take place online on October 9th, 2020 at 4:00 PM (CEST).

  • Tue
    13
    Oct
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on October 13th, 2020 from 10 am to 11:30 am (Paris time).

  • Thu
    15
    Oct
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday October 15th, 2020 from 3 PM to 4 PM (CET).

  • Thu
    22
    Oct
    2020
    Sat
    24
    Oct
    2020
    Online

    Due to the COVID-19, VASCERN's annual seminar, VASCERN Days 2020, will take place online from October 22-24th, 2020!

    This year, we will come together using the Whova event app and Webex for our virtual meeting sessions.

    We look forward to welcoming our participants to this online 3-day seminar! Currently we are expecting 76 Healthcare Provider (HCP) representatives, 12 representatives from our 7 Affiliated Partners and 22 European Patient Advocate Group (ePAG) patient advocates, as well as 35 invited stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases)Eurordis, members of our VASCERN Registries Project team, EJP-RDthe French Ministry of HealthAP-HP Bichat Hospital and more!

    Access the full, detailed program here

     

    An overview of the agenda for this 3-day online seminar can be seen below:

    Day 1: Thursday, October 22nd

    8.45-12.05 VASCERN ANNUAL BOARD MEETING

    9.00-9.20 VASCERN’s Management & Coordination

    9.20-9.35 VASCERN’s Enlargement & Cooperations

    9.35-9.45 Inter-ERN Working Group on Legal & Ethical Issues and Relations with Stakeholders: cooperation with the industry

    10.00-11.00 Work Packages

    10.00-10.35 Implementation (7’ per RDWG Chair)

    10.35-11.00 Q&A, sharing best practices & inter-RDWGs projects

    11.00-11.15 Q&A and approval by the Board

    11.30-11.45 European Patient Advocacy Group (ePAG) views, projects & new developments, including Q&A

    11.45-12.05 Clinical Patient Management System (CPMS)

    13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS

    Including 14.30-16.00: RDWGs CPMS clinical case discussions (clinicians only)

    16.00-16.15 Council meeting (Chairs only) to select the 5 topics for the Day 2 Brainstorming plenary session

    Day 2: Friday, October 23rd

     8.30-9.00 Research: European Joint Programme on Rare Diseases (EJP RD): calls and opportunities & Q&A

    9.15-9.45 VASCERN’s Registry WG

    10.00-11.00 Brainstorming on 5 strategic topics selected by the RDWGs (12’by topic, each topic discussion moderated by the Chair of the RDWG)

    11.45-12.15 Pregnancy Working Group chaired by Julie De Backer

    13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS, including interRDWG sessions

    16.00-16.30 Board plenary: RDWGs’sessions summary outcomes & introducing the way forward (6’ per RDWG)

    Day 3: Saturday, October 24th

     9.00-12.00 PPL & VASCA WORKING GROUPS - PARALLEL SESSIONS

    PPL: CPMS Clinical Case Discussions (clinicians only)

    VASCA: Implementation of Work Packages

     12.30-13.30 - European Patient Advocacy Group (ePAG) separate wrap-up

  • Tue
    27
    Oct
    2020
    10:00AM-12:30PM (CET)Videoconference call - Webex

    The 8th ERN IT Advisory Group Meeting will take place online on Tuesday October 27th, 2020. Ibrahim Donmez, our IT Helpdesk & End User Support Specialist, will be present at this event.

  • Wed
    28
    Oct
    2020
    2:00PM-3:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on October 28th, 2020 at 2:00 PM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Wed
    04
    Nov
    2020
    5:00PM-6:30PM (CET)GoToMeeting

    The Internal ERN Coordinator's Group Meeting will take place online on November 4th, 2020 at 5:00PM (CET).

  • Thu
    05
    Nov
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 5th, 2020 from 3 PM to 4 PM (CET).

  • Mon
    09
    Nov
    2020
    Fri
    13
    Nov
    2020
    Online

    The International Congress on the Effects of COVID19 on People with Rare Diseases, organised by Share4Rare, will be held online on November 9th, 11th and 13th, 2020.

    The congress arises from the recent creation of the international registry of patients with rare diseases and COVID-19, which aims to improve the current knowledge of the effects of this new infectious disease in rare disease patients. The initiative is fostered by Share4Rare, aimed at connecting and educating families affected by rare diseases, as well as promoting collaborative research through the sharing of clinical information from relatives and patients.

    Register here

    Access the full agenda  here

  • Mon
    09
    Nov
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on November 9th, 2020 at 5 pm (Paris time).

  • Mon
    16
    Nov
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on November 16th, 2020 at 5:30 pm (Paris time).

  • Wed
    18
    Nov
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on November 18th, 2020 at 3:45 pm (Paris time).

  • Thu
    19
    Nov
    2020
    7:00PM (ET)Online

    The GenTAC Aortic Summit Highlights Webinar will take place on Thursday, November 19, at 7 pm ET (1am CET - webinar will be recorded).

    This webinar will give an overview of the highlights from the GenTAC Aortic Summit 2020 with Kim Eagle, MD, GenTAC Chair, and Josephine Grima, PhD, Chief Science Officer for The Marfan Foundation, presenting. It is a great opportunity for the patient community to learn what researchers around the world discussed at the recent scientific meeting, which included topics on familial aortopathy, Marfan syndrome, VEDS, chronic aortic aneurysms, exercise and Marfan syndrome, aortic surgery, and more.

    Register to attend the live webinar, or to receive the recording of the webinar, here

  • Fri
    20
    Nov
    2020
    2:00 pmZoom

    The joint ERN ReCONNET and VASCERN webinar on cardiovascular aspects of Ehlers-Danlos syndrome (EDS) will take place on November 20th, 2020 at 2 PM (CET).

    Medium-Sized Arteries Working Group (MSA-WG) Chair, Dr. Leema Robert, and MSA-WG (and ERN ReCONNET) member Dr. Fransiska Malfait will discuss the various types of EDS with cardiovascular manifestations, including vascular EDS!

    To register, click here.

  • Mon
    23
    Nov
    2020
    11:00AM-12:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on November 23rd, 2020 at 11 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Mon
    23
    Nov
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on November 23rd, 2020 at 5 pm (Paris time).

  • Wed
    25
    Nov
    2020
    5:00PM-6:30PM (CET)Videoconference call - Webex

    The Internal ERN Coordinators Group Meeting will take place online on November 25th, 2020 at 5:00PM (CET).

  • Thu
    26
    Nov
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 26th, 2020 from 3 PM to 4 PM (CET).

  • Fri
    27
    Nov
    2020
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting #41 will take place on November 27th, 2020 at 8 am (Paris time).

  • Fri
    27
    Nov
    2020
    9:00AM-4:00PM (CET)Videoconference call - Webex

    The ERN Coordinators Group Meeting will take place online on November 27th, 2020 from 9 AM to 4 PM (CET). Professor Jondeau and Marine Hurard will be attending.

  • Mon
    30
    Nov
    2020
    9:00AM-1:00PM (CET)Online

    The European Medicines Agency (EMA) is organising a Workshop on Support for Orphan Medicines Development which will take place online on November 30th, 2020 from 9AM-1pm.

    This virtual event aims to encourage early and efficient interactions with the regulators by highlighting pre-marketing support in medicine development in rare diseases. Existing tools such as orphan designation, protocol assistance and PRIME scheme will be highlighted and explained in the context of early product development strategy.

    For the agenda click here

    To register click here

    For more information click here

  • Tue
    08
    Dec
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on December 8th, 2020 from 10 am to 11:30 am (Paris time).

  • Mon
    14
    Dec
    2020
    10:30AM-12:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on December 14th, 2020 at 10:30 AM (CET). Romain Alderweireldt (VASCERN Ethical and Legal WG Chair) will be representing VASCERN.

  • Thu
    17
    Dec
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday December 17th, 2020 from 3 PM to 4 PM (CET).

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