• Mon
    26
    Nov
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Thu
    22
    Nov
    2018

    Read our article about this new EU Funding here 

    Call text available here

     

  • Wed
    21
    Nov
    2018
    Thu
    22
    Nov
    2018
    Brussels, Belgium

    The 4th Conference of the European Reference Networks (ERNs) entitled "ERNs in action" will take place in Brussels, Belgium from November 21-22, 2018.

    The objectives of this year's conference will be to:

    • Mark that ERNs are entering the next stage of their lifecycle: the deployment phase.
    • Present the main clinical and organisational outcomes and success stories of the networks and consider the lessons learned.
    • Identify the main challenges, potential improvements and opportunities for the functioning and management of the networks and the way forward for the future of the ERN system

    VASCERN members who will be at this event include: our Coordinator, Prof. Guillaume Jondeau (who will Co-lead parallel session 6), Prof. Leo Schultze Kool (VASCERN Registry WG Chair and VASCERN VASCA-WG Co-Chair), Prof. Claire Shovlin (VASCERN HHT-WG Chair), Prof. Julie De Backer (VASCERN HTAD-WG Chair), Dr Leema Robert (VASCERN MSA-WG Chair), Prof. Robert Damstra (VASCERN PPL-WG Chair, parallel session 6 speaker), Prof. Miikka Vikkula (VASCERN VASCA-WG Chair), Dr Alessandro Pini (eHealth & Training / Education WG Chair), Romain Alderweireldt (VASCERN Ethical and Legal WG Chair (interERN WG)), Juergen Grunert (VASCERN ePAG Chair) and Natascha Assies (VASCERN ePAG co-chair for PPL and parallel session 6 speaker). VASCERN Coordination team members Marine Hurard (Project Manager) and Natasha Barr (Project Officer) will equally be in attendance.

    Prof Guillaume Jondeau will co-lead the parallel session 6 entitled Patient's representatives and Healthcare providers partnerships where Prof Robert Damstra and Natascha Assies will present An Overview of Pediatric and Primary Lymphedema, the Pill of Knowledge (PoK) that was created thanks to the cooperation between patient advocates and healthcare professionals.

    Further details TBA.

  • Wed
    21
    Nov
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Tue
    20
    Nov
    2018
    14:00PM-18:30PM (CET)Brussels, Belgium

    The 6th ERN Coordinators Group (ERN-CG) Meeting will take place on November 20th, 2018 in Brussels, Belgium.

  • Mon
    19
    Nov
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Fri
    16
    Nov
    2018
    Sat
    17
    Nov
    2018
    Oslo, Norway

    The HHT Europe Annual Meeting will take place from November 16-17, 2018 in Oslo, Norway.

    This meeting will reunite the community of HHT Patient Organisations with 35 delegates from 12 EU organizations present, along with the participation of Marianne Clancy from Cure HHT (via videoconference). This includes many of VASCERN's ePAG advocates for HHT.

    The aim of the annual meeting will be to share best practices, capacity building, and to increase know how and knowledge.

     

  • Wed
    14
    Nov
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    13
    Nov
    2018
    10:00AM-11:00AM (CET)Videoconference call
  • Tue
    13
    Nov
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    06
    Nov
    2018
    Thu
    08
    Nov
    2018
    Barcelona, Spain

    Europe’s largest Orphan Drug Congress will be back for an 8th session from November 6-8, 2018 in Barcelona Spain. This congress allows the rare disease community a chance to discover the latest developments and technologies in the orphan drugs industry.

    All information and registration on the event page here

  • Fri
    26
    Oct
    2018
    Sat
    27
    Oct
    2018
    Leipzig, Germany

    The DIGGFA society (Deutschen interdisziplinären Gesellschaft für Gefäßanomalien or, in English, the German Interdisciplinary Society for Vascular Anomalies), will hold its annual meeting on October 26-27, 2018.

    Prof. Jochen Rössler (from VASCERN's VASCA-WG) will give a presentation at this event.

    Read the programme (in German) here

  • Fri
    26
    Oct
    2018
    8:30AM-18:35PMBudapest, Hungary

    The first Central-Eastern European Marfan Symposium, organised by our HCP Member, Prof. Zoltán Szabolcs, MD; and Dr Kálmán Benke, MD, PhD; Heart and Vascular Center, Semmelweis University, Budapest, will take place on October 26th, 2018 in Budapest, Hungary.

    Prof Guillaume Jondeau, VASCERN Coordinator, will present VASCERN and the HTAD-WG at this event.

    (1) European Reference Network for Vascular Diseases (VASCERN)
    Prof. Guillaume Jondeau, MD; Director, Heart Failure Unit, Cardiology Department, Claude Bichat-Claude Bernard Hospital, Paris Director, Centre de référence sur le syndrome de Marfan et apparentés

    Prof Julie De Backer, VASCERN HTAD-WG Chair, will be also in attendance and present:

    (8) Marfan cardiomyopathy
    Prof. Julie De Backer, MD; Centrum Medische Genetica, Gent

    Prof. Jolien Roos-Hesselink, from our HCP Member Erasmus MC, Rotterdam, HTAD-WG Member, will also be presenting:

    (11) Pregnancy in Marfan syndrome
    Prof. Jolien Roos-Hesselink, MD; Erasmus MC, Rotterdam

    To see theprogram, click here

    All information and registration here

  • Mon
    22
    Oct
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Thu
    11
    Oct
    2018
    Fri
    12
    Oct
    2018
    Paris, France

    VASCERN Days 2018 (2-day annual seminar) will take place on October 11-12, 2018 in Paris, France.

    This event is only open to members of VASCERN (both HCPs & ePAGs) as well as several invited guests from institutions such as the European Commission, OpenAPP, EURORDIS, and the French Ministry of Health. In total, more than 100 participants, from all across Europe, are expected!

    To read the full programme click here

    For more information on this event click here

     

     

     

  • Tue
    09
    Oct
    2018
    Wed
    10
    Oct
    2018
    Rome, Italy

    The National Center for Rare Diseases is organising a two-day course entitled Clinical Practice Guidelines for Rare Diseases : development and quality assessment. 

    The course intends to promote guideline quality standards in rare diseases and to support the European Reference Networks in the development of their capacity
    to produce and assess clinical practice guidelines.

    Further information here

     

     

     

  • Mon
    01
    Oct
    2018
    Tue
    02
    Oct
    2018
    Yarnfield, UK

    The British Lymphology Society (BLS) will hold their annual conference from October 1-2, 2018 in Yarnfield, UK.

    Confirmed speakers include PPL-WG members, Professor Vaughan Keeley and Dr Kristiana Gordon.

    For more information, click here

  • Wed
    26
    Sep
    2018
    Sat
    29
    Sep
    2018
    Ghent, Belgium

    The International Symposium of the Ehlers-Danlos Syndromes will take place in Ghent, Belgium, from the 26-29 of September 2018.

    Members of our Medium-Sized Artery Working Group (MSA-WG), including Dr. Leema Robert (Chair of MSA-WG), Prof Xavier Jeunemaitre (Co-Chair of MSA-WG) and Prof Julie De Backer, will be in attendance.

    Dr Leema Robert will present VASCERN and the new VASCERN mobile App during her presentation: Development of a multipurpose mobile app for patients with EDS.

    For more information, including the full program, click here

    To register for this event, click here

  • Tue
    25
    Sep
    2018
    14:00PM-17:00PMWeb Streaming

    The Expert Panel on Effective ways of Investing in Health will organise a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area (webstreamed) on Tuesday September 25th, 2018 from 14:00-17:00 CET.

    To watch the webstreaming, click here

    More information here

     

  • Mon
    24
    Sep
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    24
    Sep
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Thu
    20
    Sep
    2018
    Sat
    22
    Sep
    2018
    Stockholm, Sweden

    The International Conferences on Rare Diseases and Orphan Drugs (ICORD) will hold its 13th Annual Meeting from the 20-21 September 2018 in Stockholm, Sweden.

    "One aim of ICORD 2018 is to review needs that have been fulfilled and, in particular, to highlight important remaining unmet needs for patients with Rare Diseases in a global perspective."

    To Register for this event click here: https://icord2018.eventsmart.com/events/icord-2018/

    For more information click here: http://icord.se/upcoming-events/icord-2018-stockholm

     

  • Wed
    19
    Sep
    2018
    Worldwide

    Aortic Disease Awareness Day is an international day of events that aim to raise awareness for aortic diseases and aortic dissection!

    For more information and to find events near you, click here

  • Wed
    19
    Sep
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    17
    Sep
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    12
    Sep
    2018
    Fri
    14
    Sep
    2018
    Liège, Belgium

    The 6th edition of the International Meeting on Aortic Diseases will be held from September 12-14, 2018 in Liège, Belgium.

    "The main goal of The International Meeting on Aortic Diseases (IMAD) is to gather all cardiovascular clinicians and scientists to share their experiences on basic research, genetic aspects of aortic aneurysms, aortic dissections, aortitis, aortic graft infection and their treatment as well as on the new pathophysiological concepts in bicuspid aortic valve, TAVI indications and surgical treatment of aortic valve diseases and also, to provide information about the latest innovations in spinal cord protection."

    Speakers at this event include Prof Julie De Backer (our HTAD WG Chair and MSA WG member) and Prof Bart Loeys (member of the HTAD and MSA WGs).

    Register for this exciting event here

    For the full program and all other information click here

  • Wed
    12
    Sep
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    11
    Sep
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Mon
    10
    Sep
    2018
    Fri
    14
    Sep
    2018
    Rome, Italy

    The 6th International Summer School Rare Disease & Orphan Drug Registries, including a “Bring Your Own Data – BYOD” to Link Rare Disease Registries session, will take place from September 10-14, 2018, at the Istituto Superiore di Sanità in Rome, Italy.

    The International Summer school intends: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations, with particular attention to governance, quality, sustainability and legal issues; ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks (ERNs) and National Plans in the EU.
    The School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology.

    The first part (September 10-12, 2018) will provide participants with useful tools and methodologies to plan, establish and manage the registry activities.

    The second part (September 13-14, 2018) will be a hands-on experience (Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.

    The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations involved in or intend to establish a rare disease registry, including inside European Reference Networks.

    Prof Guillaume Jondeau, VASCERN Coordinator, will represent VASCERN at the first part of this event.

    Register before May 30th, 2018 via the online registration form here

    The provisional agenda for the event can be found here

    For more information click here

     

  • Mon
    10
    Sep
    2018

    The Orphan Disease Center is offering 39 research opportunities focusing on 23 different rare diseases. This program provides a one-year grant to support research related to a rare disease represented in the 2018 Million Dollar Bike Ride.

    Of the 23 rare diseases on the list, two grants of $50,535 are available for basic science and/or clinical research on Generalized Lymphatic Anomaly (GLA; a.k.a. lymphangiomatosis) and Gorham-Stout Disease (GSD), diseases covered by our VASCA-WG. Areas of interest include, but are not limited to, genetic analysis, biomarker identification, cell line creation and characterization, and imaging.

    These two grants are made possible by Team LGDA (Lymphangiomatosis & Gorham’s Disease Alliance) and Team LMI (Lymphatic Malformation Institute).

    For more information on these two grants, or any of the others available, and how to apply, click here

    Deadline for submitting a Letter of Interest is by Monday, September 10th, 2018 by 8pm EST. 

  • Thu
    06
    Sep
    2018
    Sat
    08
    Sep
    2018
    Helsinki, Finland

    The 7th Nordic Congress of Lymphology will take place in Helsinki, Finland, from September 6-9, 2018.

    Members from both the VASCA-WG (including Chair, Prof Miikka Vikkula) and PPL-WG (including Chair Prof Robert Damstra, Dr Michael Oberlin, Prof Sinikka Suominen, and Dr Kristiana Gordon) will be giving presentations at this event!

    To register for this event click here

    For more information click here

  • Wed
    29
    Aug
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Sat
    25
    Aug
    2018
    Wed
    29
    Aug
    2018
    Munich, Germany

    The European Society of Cardiology (ESC) Congress 2018, the world's largest cardiovascular congress, will take place from August 25-29th, 2018 in Munich, Germany.

    Many VASCERN members will be attendance at this international event, including Prof Julie De Backer (Chair of HTAD-WG), Prof Guillaume Jondeau (Co-Chair of HTAD-WG), Prof Yskert von Kodolitsch (HTAD-WG) and Prof Jolien Roos-Hesselink (HTAD-WG).

    For more information and for the full programme, click here

    Early Registration Deadline: May 31, 2018.

    Register for this event here

  • Mon
    20
    Aug
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Mon
    23
    Jul
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    18
    Jul
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    16
    Jul
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    11
    Jul
    2018
    Fri
    13
    Jul
    2018
    Warth (Canton Thurgau), Switzerland

    The 6th radiz Rare Diseases Summer School will take place in the Kartause Ittingen, Warth (Canton Thurgau), Switzerland, from July 11th to July 13th 2018. It is organised by radiz, a clinical research priority program of the University of Zurich with collaborations between the Children's Hospital Zurich, the University of Zurich, and the UniversityHospital Zurich.

    Lectures by national and international rare disease experts, workshops and poster presentations by participants will all take place during this 3 day event!

    Application deadline: April 9th 2018.

    See preliminary programme here

    For more information click here

  • Wed
    11
    Jul
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    11
    Jul
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Tue
    10
    Jul
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    04
    Jul
    2018
    18:00PM-19:00PM (CET)Videoconference call - Webex

    The 5th VASCERN Council Meeting will take place on July 4th, 2018 at 6PM.

  • Mon
    02
    Jul
    2018
    Tue
    03
    Jul
    2018
    London, UK

    The International Congress on Advanced Treatments in Rare Diseases (RARE2018) will take place from July 2-3, 2018 in London, UK. This congress will address the challenges of developing rare disease treatments as well present the latest in rare disease therapies.

    Early bird registration, until March 14, 2018,  here

    For full programme, click here

    For further information click here

  • Thu
    28
    Jun
    2018
    Fri
    29
    Jun
    2018
    Rome, Italy

    The International Conference on Vascular Anomalies organized by La Società Italiana per lo Studio delle Anomalie Vascolari (SISAV) will take place from June 28-29, 2018 in Rome, Italy.

    Members of the VASCA-WG will be giving presentations at this event, including Prof Miikka Vikkula (Chair), Prof Laurence Boon, Dr May El Hachem, and Dr Andrea Diociaiuti.

    Link to the program here

  • Tue
    26
    Jun
    2018
    Brussels, Belgium

    The representatives of the Ministry of Health will meet at the ERN Board of Member States meeting.

  • Mon
    25
    Jun
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    25
    Jun
    2018
    8:45AM-17:00PMBrussels, Belgium

    The 5th meeting of the ERN Coordinators Group (ERN-CG) will take place on June 25th, 2018 in Brussels, Belgium.

    It will be preceeded by the internal coordinator's meeting.

  • Fri
    22
    Jun
    2018
    8:30AM-17:00PMEspace Grenelle, 84 rue de Grenelle, Paris 7ème

    The Annual FAVA-Multi (The French Network for Rare Vascular Diseases) Day will take place on June 22, 2018 in Paris, France. Prof Guillaume Jondeau (Coordinator of both FAVA-Multi and VASCERN) will be at this event.

    Marine Hurard, VASCERN Project Manager, will present VASCERN's actions to date.

    The program of the event, in French, can be found here

     

  • Wed
    20
    Jun
    2018
    16:00PM-17:00PM (CET)Videoconference call - Webex
  • Mon
    18
    Jun
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Sat
    16
    Jun
    2018
    Tue
    19
    Jun
    2018
    Milan, Italy

    The latest advances in human genetics will be explored at the the 51st European Human Genetics Conference in Milan, Italy from June 16-19, 2018. Participants from all over the world will be in attendance and VASCERN members, Prof Laurence Boon (VASCA WG) and Prof Miikka Vikkula (Chair of VASCA WG) will be speakers at this exciting event with presentations entitled "Etiology of vascular malformations: A question of place and timing" and "Clinical management of vascular malformations"

    Deadline to submit an abstract: Friday, March 9, 2018

    Early bird deadline: Friday, April 6, 2018

    Link to programme here

    For further information visit the event website here

  • Wed
    13
    Jun
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    12
    Jun
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Mon
    11
    Jun
    2018
    Fri
    15
    Jun
    2018
    Barcelona, Spain

    The EURORDIS summer school is taking place in Barcelona from the 11 - 15 June 2018. This year, the summer school will focus on educating patients and researchers on the regulatory process of orphan medicinal products in Europe in order to strengthen their advocacy skills. The last day to register for the English edition is November 30th, 2017 and the last day to register for the Spanish edition is December 15th, 2017.

    All information here

  • Fri
    08
    Jun
    2018
    9:00AM-1:00PM (CET)Brussels, Belgium

    The second meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on June 8, 2018 in Brussels, Belgium.

    The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

  • Wed
    06
    Jun
    2018
    Sat
    09
    Jun
    2018
    Rotterdam, The Netherlands

    The 8th International Lymphoedema Framework (ILF) Conference will take place from the 6th-9th of June, 2018 in Rotterdam, the Netherlands. This conference, hosted by the ILF and the Dutch Lymphoedema Framework (NLNet) will be a great opportunity for healthcare professionals, researchers, patients, and industry to discuss the latest advances in the treatment and care of lymphoedema and to raise awareness in order to make it a priority on all national health agendas.

    There will also be a Children's Day on June 9th, where children can participate in a variety of workshops all centered around the theme ‘Children and edema: a dynamic duo’.

    Register here

    For more information, click here!

  • Wed
    06
    Jun
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex

    The VASCERN Patient Registry WG meeting #6 will take place place on June 6, 2018 at 5 pm.

  • Thu
    31
    May
    2018
    17:30 PM - 18:30 PM (CET)Videoconference call - Webex
  • Wed
    30
    May
    2018
    Fri
    01
    Jun
    2018
    Amsterdam, The Netherlands

    The 22nd ISSVA (International Society for the Study of Vascular Anomalies) International Workshop will be held in Amsterdam, Netherlands from May 29-June 1st, 2018. This biannual meeting will be co-chaired by Prof Leo Schultze Kool (co-chair of the VASCA WG and chair of the Patient Registry WG) and will be attended by specialists from expert centres all around the world.

    All of the HCP members of the VASCA WG will be represented and a large number of them will equally be speaking at the event or presenting posters. Our VASCA-WG will use this opportunity to assemble for a face-to-face meeting on Monday May 28th.

    This year, for the first time, patient organisations will be actively involved and there will be a Patient Organisations meeting that will take place on the afternoon of Tuesday May 29th, 2018.

    This biannual meeting, which is attended by a wide array of specialists including intervention radiologists, dermatologists, plastic surgeons, ENT surgeons, pediatricians, pediatric surgeons, oncologists and pathologists, presents the latest developments in this fast moving area.

    Watch the promotional video here

    Early bird registration deadline: 16 March 2018

    Discounted registration deadline: 1 May 2018

    All information and registration on the event page here

  • Tue
    29
    May
    2018
    Wed
    30
    May
    2018
    London, UK

    An RD-Action workshop, co-organised with the European Medicines Agency (EMA) and with DG Sante, will take place in London from May 29th-30th, 2018.

    This event hopes to showcase the ERNs to the EMA, to explore how ERNs can add value to clinical trials/studies, and to define some concrete steps towards a more strategic engagement with the EMA, in particular, in future.

    Prof Claire Shovlin (Chair of our HHT-WG) will represent VASCERN at this event.

    More information TBA.

  • Tue
    29
    May
    2018
    London, UK

    The VASCERN HHT-WG will have a face-to-face meeting in London, UK on May 29th, 2018. Further details on this meeting TBA.

  • Tue
    29
    May
    2018
    Brussels, Belgium

    The VASCERN HTAD-WG will hold a face-to-face meeting in Brussels, Belgium on May 29th, 2018. Further details on this meeting TBA.

  • Mon
    28
    May
    2018
    Amsterdam, The Netherlands

    Our VASCA-WG will assemble for a face-to-face meeting on Monday May 28th in Amsterdam, The Netherlands.

    This meeting will be held before the ISSVA 22nd International Workshop, that runs from May 30th-June 1st, 2018. More details here.

  • Wed
    23
    May
    2018
    London, UK

    The VASCERN MSA WG will hold a face-to-face meeting on May 23rd, 2018 in the framework of the Pan London aortopathy meeting at Guy's Hospital in
    London, UK. Further details TBA.

  • Wed
    23
    May
    2018
    13:00 - 17:20 BSTLondon, UK

    The Pan-London Aortopathy meeting with Focus on Pregnancy will take place in London on the afternoon of May 23rd, 2018. This meeting will follow the MSA-WG face-to-face meeting in the morning.

    Dr. Leema Roberts and Dr. Yaso Emmanuel (Chair and member of the MSA-WG) will give a presentation entitled "Introduction to the European Reference Network (ERN) for Rare Vascular diseases" and a discussion period will allow participants to give their feedback on what topics they think should be covered by the soon to be created 'pills of knowledge' by the MSA-WG.

    Read the full programme here

     

  • Tue
    22
    May
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Wed
    16
    May
    2018
    16:00PM-17:00PMVideoconference call - Webex
  • Tue
    15
    May
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Thu
    10
    May
    2018
    Sat
    12
    May
    2018
    Vienna, Austria

    ECRD – the European Conference on Rare Diseases & Orphan Products is the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.

    All information & registration available here

    Deadline to register: 27 April 2018
    Early-bird cut off date: 15 March 2018

    Programme

  • Sun
    06
    May
    2018
    Amsterdam, the Netherlands

    The Marfan Foundation’s First International Patient Symposium on Marfan Syndrome and Related Disorders will be held on May 6th, 2018 in Amsterdam, The Netherlands.

    This event will feature leading medical speakers from several countries, including the US, and will offer both education and support programs that were created to increase a patient's understanding of Marfan and related disorders, answer any questions about diagnosis and treatment, and improve the quality of life of patients with these diseases.

    Topics pertaining to adults, teens, and children with Marfan and related disorders will be covered. The program also includes a Creating Connections Luncheon where patients can spend time networking with people in their area who also have Marfan or a related disorder.

    After the main program there will be time for a meet and greet with the doctors and fellow patients from across Europe.

    To register for this event click here

    For more information on this event click here

     

  • Thu
    03
    May
    2018
    Sat
    05
    May
    2018
    Amsterdam, The Netherlands

    The 10th International Research Symposium on Marfan Syndrome (MFS) and Related Disorders (RD) will take place from the 3rd-5th of May, 2018 in Amsterdam, The Netherlands.

    This symposium brings together the world’s leading experts (including members from the VASCERN HTAD WG) to discuss the most recent and innovative research on MFS and RD. A wide variety of topics will be discussed including sessions on  "Genetic and Environmental Modifiers of MFS and RD Phenotypic Variability" to "Medical and Holistic Treatment Options for Pain in MFS".

    Early bird registration ends on February 1st, 2018! To register for this event, click here

    Find the schedule for the event here

    For further information, click here

     

  • Wed
    02
    May
    2018
    Amsterdam, The Netherlands

    The 2nd Vascular Ehlers Danlos Syndrome (vEDS)Scientific Meeting will take place May 2, 2018 in Amsterdam, the Netherlands. This meeting will bring together some of the brightest minds within the international vEDS community to discuss current needs and concerns, as well as recent advances in their research.

    Several VASCERN MSA-WG members will be present at this event including Dr. Leema Robert (Chair), Prof Xavier Jeunemaître (Co-Chair), Prof Julie De Backer and Dr. Michael Frank.

    More information here

  • Thu
    26
    Apr
    2018
    17:00PM (CET)

    The objective of this action is to support Member states in improving the gathering of information on rare diseases by the implementation of Orphacodes (rare diseases specific codification system).

    For more information click here

    Submission deadline: 26 April 2018 at 17:00 PM (CET)

  • Mon
    23
    Apr
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Sat
    21
    Apr
    2018
    Tue
    24
    Apr
    2018
    Manchester, UK

    The third cardiogenetics training course supported by the European Society of Human Genetics will take place in Manchester, UK (course organizers: Prof Bill Newman, Manchester Centre for Genomic Medicine; Prof Bart Loeys, Clinical Genetics, University of Antwerp; prof Johan Saenen, cardiology, University of Antwerp) from Saturday April 21st to Tuesday April 24th 2018.

    The course is mainly intended for young trainees in genetics and cardiology and consists of lectures, interactive and case-based teaching covering clinical and molecular aspects of cardiogenetic disorders. Speakers at this event include Prof Bart Loeys (VASCERN HTAD and MSA WG member) and Prof Xavier Jeunemaitre (VASCERN MSA-WG Co-Chair).

    For course program, all practical information and to register for the course please go via the ESHG website here

    Ten ESHG scholarschips (covering registration and accommodation) are available for young cardiologists/ clinical geneticists in training from European Countries. Preference will be given to students from countries which are disadvantaged economically. To apply for a scholarship please send after registration a motivation letter to anne.m.burns@manchester.ac.uk.

     

  • Wed
    18
    Apr
    2018

    The European Commision Call for the European Joint Programme Co-fund on Rare Diseases has been published:

    http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/h2020/topics/sc1-bhc-04-2018.html

    The overall objective is to implement a European Joint Programme (EJP) Cofund for Rare Diseases which would create a research and innovation pipeline "from bench to bedside" ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients.

    The initiative should follow the policies and contribute to the objectives of the International Rare Diseases Research Consortium (IRDiRC).

  • Wed
    18
    Apr
    2018
    16:00PM-17:00PMVideoconference call - Webex
  • Wed
    18
    Apr
    2018
    17:00PM-18:00PMVideoconference call - Webex
  • Mon
    16
    Apr
    2018
    17:30PM-18:30PM (CET)Videoconference call - Webex
  • Wed
    11
    Apr
    2018
    Fri
    13
    Apr
    2018
  • Tue
    10
    Apr
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Tue
    10
    Apr
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Wed
    28
    Mar
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Mon
    26
    Mar
    2018
    Thu
    29
    Mar
    2018
    Cambridge, UK

    All information on this conference here

  • Mon
    26
    Mar
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    19
    Mar
    2018
    17:30 PM - 18:30 PM (CET)Videoconference call - Webex
  • Thu
    15
    Mar
    2018

    The European Research Area Network on Cardiovascular Diseases (ERA-CVD) has announced the Joint Transnational Call 2018 (JTC 2018) entitled “Transnational Cardiovascular Research Projects driven by Early Career Scientists” that opened on January 11th, 2018.

    This call is open to all early career scientists, which is defined as a scientist that has “been awarded his/her first doctoral degree at least 3 years and up to 10 years prior to the pre-proposal deadline of the ERA-CVD JTC 2018”, in the field of cardiovascular diseases. Funding will only be awarded to transnational projects with a minimum three research groups from three different countries (for the list of eligible countries and their corresponding funding organisations, see link below).

    This call aims to foster international collaboration and interchange between early career scientists in order to answer key questions in cardiovascular disease research with innovative and ambitious multidisciplinary research projects.

    Link to call text here

    For all other information: http://www.era-cvd.eu/294.php

    Call opens: January 11, 2018

    Deadline for submission the pre-proposals: March 15, 2018, 17:00 CET

    Deadline for submission the full-proposals: June 15, 2018, 17:00 CET

  • Wed
    14
    Mar
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    13
    Mar
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Thu
    08
    Mar
    2018
    Fri
    09
    Mar
    2018
    Milan, Itlay

    The Joint Research Centre (JRC) of The European Commission will hold its second training workshop on the European RD Registry Infrastructure (ERDRI) Tools on March 8-9th in Milan Italy. This session will deal specifically with the Pseudonymisation Tool and the Search Broker.

    VASCERN will be represented at this event by Prof Leo Schultze Kool, Chair of the Patient Registry WG, along with Dr Susan Marelli and Dr Raffaella Gaetano.

  • Thu
    08
    Mar
    2018
    18:00PM-19:00PM (CET)Videoconference call - Webex

    The VASCERN Patient Registry WG meeting #5 will take place place virtually on March 8, 2018 at 6pm.

  • Wed
    07
    Mar
    2018
    Sat
    10
    Mar
    2018
    Bologna, Italy

    The RE(ACT) CONGRESS, the International Congress on Research of Rare and Orphan Diseases, will take place in Bologna, Itlay from July 7-10, 2018.

    All information about the RE(ACT) CONGRESS & registration available here.

    For a limited time, a special registration rate for the RE(ACT) Congress 2018 is available. The special price is 250 Euros (only payable by credit card and not applicable to private companies). To benefit of the special rate, please register on the registration page and insert the promotional code “HAPPYCRAZYRATE” at the end of the form.

  • Wed
    07
    Mar
    2018
    18PM-19PM (CET)Videoconference call - Webex

    The VASCERN Council meets every 4 months, or more depending on needs. This is the 4th VASCERN Council meeting. The Council is chaired by the Coordinator and Members are the Chairs of our Working Groups.

  • Tue
    06
    Mar
    2018
    10:00AM-16:30PM (CET)Brussels, Belgium
  • Tue
    06
    Mar
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    05
    Mar
    2018
    Brussels, Belgium

    The 4th ERN Coordinators Group Meeting will take place on March 5th, 2018 in Brussels, Belgium.

  • Wed
    28
    Feb
    2018
    Worldwide

    Rare Disease Day 2018 will take place on February 28th, 2018! This yearly International event aims to to raise awareness for Rare Diseases with the general public and policy-makers and everyone is encouraged to take part!

    There will be numerous events all around the world, including a Rare Disease Day 2018 event in Paris, France organised by the French Rare Disease Networks. The "Rare Disease Village" will take place in Paris under the canopy of the Forum des Halles. Visitors will be able to participate in a wide variety of interactive activities including a central area dedicated to adaptive sports, rare disease quizzes with prizes, a photobooth and various workshops on different themes such as "Dare Diseases and Nutrition" and "Introduction to Rare Disease Research". This event aims to reach out to the general public in order to raise awareness for rare diseases.

    VASCERN will equally be in attendance at this event in order to inform the public about VASCERN and the European Reference Networks (ERNs) in general. We look forward to seeing you  there!

    Link to the event here

    For a list of events near you click here

    All information at https://www.rarediseaseday.org/

    The official 2018 Rare Disease Day video is now available (in 24 languages)! Find it here

     

  • Mon
    26
    Feb
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    26
    Feb
    2018
    17:30PM-18:30PMVideoconference call - Webex
  • Thu
    22
    Feb
    2018
    Sat
    24
    Feb
    2018
    Brussels, Belgium

    The International Symposium entitled "Revisiting Fibromuscular Dysplasia and Related Vascular Diseases" will take place in Brussels, Belgium from February 22-24, 2018.

    This exciting event will unite the top experts in Fibromuscular Dysplasia (FMD) including the meeting's Co-President, Prof Alexandre Persu, who is an expert in FMD and in charge of the Hypertension Clinic at the Université Catholique de Louvain (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels), a centre we hope to include in the upcoming expansion of the VASCERN network.

    VASCERN members Prof Bart Loeys, Prof Xavier Jeunemaitre and Prof Miikka Vikkula will also be in attendance!

    To register click here

    Full programme here

    Additional information here

  • Wed
    21
    Feb
    2018
    Brussels, Belgium

    The 26th EURORDIS Round Table of Companies Workshop, entitled "Rare disease therapies: do you get what you incentivise?" will take place on February 21st, 2018 in Brussels, Belgium.

    This workshop will bring together stakeholders interested rare diseases and orphan drug development to discuss the role of incentives in rare disease therapies development,  the shortcomings of the current system and the strategies that the rare disease community can use to fulfill important unmet medical needs.

    See the preliminary Programme here

    For more information, click here

  • Wed
    21
    Feb
    2018
    11 AM-4 PMInstitut Imagine, Paris

    The European Joint Programme on Rare Diseases is currently under elaboration. European Reference Networks are partners of this future new European programm.e for Rare Diseases research. Professor Claire Shovlin and Marine Hurard will be attending for VASCERN at this event.

  • Wed
    21
    Feb
    2018
    16:00PM-17:00PMVideoconference call - Webex
  • Wed
    21
    Feb
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    13
    Feb
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Tue
    13
    Feb
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Fri
    09
    Feb
    2018
    Paris, France

    The 3rd International Congress organized by UNSED, French National Union of Ehlers-Danlos syndromes, will take place in Paris, France on February 9th, 2018. Prof Xavier Jeunemaitre (MSA-WG Co-Chair) will be one of the speakers at this event, where he will give a presentation on the latest news in vascular EDS.

    More information here

     

  • Fri
    09
    Feb
    2018
    8:00AM-9:00AM (CET)Videoconference call - Webex
  • Thu
    08
    Feb
    2018
    Fri
    09
    Feb
    2018
    Baveno, Italy

    The Joint Research Centre of The European Commission will host a training workshop on Rare Disease Registries from February 8-9th, 2018 in Baveno, Italy.

    Prof Leo Schultze Kool (Patient Registry WG Chair) and Dr. Alessia Paglialonga will be attending for VASCERN.

  • Tue
    06
    Feb
    2018

    The launch of the 10th E-Rare-3 Call for Proposals 2018 "Transnational research projects on hypothesis-driven use of multi-omic integrated approaches for discovery of disease causes and/or functional validation in the context of rare diseases" occurred on December 7, 2018.

    This call is aimed at scientists from different countries (see link below for list of 18 countries eligible and their respective funding organisations) wishing to establish a successful international collaboration on a common research project involving a group of rare diseases or a single rare disease. Each consortium submitting a proposal must be composed of atleast 3 eligible research partners from at least 3 different countries.

    Project proposals should highlight the added-value of transnational collaboration, should focus on hypothesis-driven use of multi-omic integrated approaches and should have a strong translational research orientation. The total budget available for this call is 18.54 M€.

    Joint Pre-proposal submission deadline: February 6, 2018 at 5 p.m. CET.

    Joint full proposal deadline (if invited): June 19, 2018 at 5 p.m. CET

    For all information on the call, including the guidelines for applicants and pre-proposal submission form, click here

  • Mon
    05
    Feb
    2018
    Tue
    06
    Feb
    2018
    Paris, France

    The European Joint Programme (EJP) Cofund on Rare Diseases will have its second meeting on the 5-6 of February, 2018 in Paris, France to work on the writing of the application for this instrument that aims to support coordinated national research and innovation programmes. Professor Claire Shovlin (Chair of the HHT-WG) will be in attendance for VASCERN at this event.

     

  • Sun
    04
    Feb
    2018
    Thu
    08
    Feb
    2018
    Melbourne, Autralia

    The 18th UIP World Congress of Phlebology will take place in Melbourne, Australia from February 4-8, 2018. It is the largest international gathering of the phlebology community. Phlebology is a multi-disciplinary field studying disorders of venous origin. Three VASCERN members are keynote invited speakers at this event: Prof Miikka Vikkula (Chair of our VASCA-WG), Prof Laurence Boon (VASCA-WG) and Prof Vaughan Keeley (PPL-WG).

    To register or find more information on this event click here!

  • Mon
    29
    Jan
    2018
    8:00 AM-9:00 AM (CET)Videoconference call - Webex
  • Thu
    25
    Jan
    2018
    16:00PM-18:00PM (CET)Videoconference call - Webex

    The VASCA WG will have their second meeting on the Orphanet classification of Rare Vascular Anomalies.

  • Mon
    22
    Jan
    2018
    Luxembourg

    The Consumers, Health, Agriculture and Food Executive Agency (CHAFEA)'s Worskshop on the Preparation of Final ERN Specific Grant Agreement (SGA) Technical and Financial Reports will be held on Monday January 22nd, 2018 in Luxembourg.

  • Mon
    22
    Jan
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Fri
    19
    Jan
    2018
    Brussels, Belgium

    The first meeting of the Scientific Committee of the 101 Genomes Marfan project (P101GM) will take place on January 19th, 2018 in Brussels, Belgium.

    The P101GM is the first pilot project of The 101 Genomes Foundation, a private Foundation that was created in November 2017 by Ludivine Verboogen & Romain Alderweireldt (Chair of the VASCERN Ethics WG and ePAG representative for the Association Belge du Syndrome de Marfan) who are parents of a child with Marfan syndrome. Its aim is to improve the lives of people affected by rare diseases by supporting research and development through the creation of a bioinformatics platform containing genomic and phenotypic cross-data from a cohort of 101 patients.

    The P101GM, dedicated to patients with Marfan syndrome, will aim to offer scientists a bioinformatics platform containing the genomic and phenotypic data of a starting cohort of 101 patients with Marfan syndrome, in the hopes of better understanding the variability and intensity of clinical manifestations seen in this disease. By using the most innovative technological tools currently available, it is hoped that researchers will be able to identify potential modifier genes (genes that affect the expression of one or more other genes) that may play a role in the severity of cardiovascular, skeletal and ocular manifestations seen in patients with Marfan syndrome, which could ultimately lead to the development of new therapeutic approaches.

    The following participants will be present at this first meeting, organised by Ludivine Verboogen and Romain Alderweireldt: Prof Julie De Backer (Chair of the VASCERN HTAD WG), Prof. Anne De Paepe, Prof. Catherine Boileau (AP-HP, Bichat-Claude Bernard Hospital, Paris, France), Dr. Guillaume Smits, Prof. Bart Loeys (member of HTAD WG) and his collaborator Aline Verstraeten, Prof. Paul Coucke, Dr. Marjolijn Renard, Dr. Michel Verboogen, Me Bruno Fonteyn, Annemie T’Seyen and Julien Wolff.

    To find out more information about this exciting new project, click here

  • Thu
    18
    Jan
    2018
    Fri
    19
    Jan
    2018
    Derby, UK

    The VASCERN Paediatric and Primary Lymphoedema Working Group (PPL-WG) has organised a two day face-to-face meeting in Derby, U.K. that will take place from January 18th-19th, 2018.

    On the first day, Prof Vaughan Keeley will give participants the chance to visit the Primary and Paediatric Lymphoedema Clinic at Royal Derby Hospital (Derby Teaching Hospitals NHS Foundation Trust). They will meet the clinic's multidisciplinary team as well as attend the Derby Lymphoedema Service Consultants Meeting in the afternoon. This will be a good opportunity for the PPL-WG to share best practices in patient care and to network.

    The Outcome Measures for Treatment Meeting will be held on the second day, January 19th, 2018, where participants will discuss possible outcome measures for PPL in adults and children (e.g. limb volume measurements, cellulitis index, Quality of Life), the proposed frequency of these measurements, and other important considerations.

    Prof Vaughan Keeley, Dr Sarah Thomis, Dr Nele DeVoodgt, Prof Isabelle Quere, Dr Ruth England, and Katie Riches will all be in attendance.

    Consult the Agenda for Day 1 (January 18th, 2018): PPL WG Clinic Visit Agenda

    Consult the Agenda for Day 2 (January 19th, 2018):  PPL WG Outcome Measures Meeting Agenda

     

  • Tue
    16
    Jan
    2018
    17:00PM-18:00PM (CET)Videoconference call - Webex
  • Mon
    15
    Jan
    2018
    17:30 PM - 18:30 PM (CET)Videoconference call - Webex
  • Wed
    10
    Jan
    2018
    17:00 PM-18:00PM (CET)Videoconference call - Webex
  • Tue
    09
    Jan
    2018

    The ERN Call for Specific Grant Agreement (SGA) for the 2nd year of ERN operation (March 2018-February 2019), under the ERN 5 years Framework Partnership Agreement, has been launched on November, 22nd. The deadline to answer is on January, 9th, 2018.

    VASCERN has signed a 5 years Framework Partnership Agreement (FPA) with the European Commission (2017-2022), therefore is eligible for this European Union funding for ERNs, and was invited to answer this call for a second year SGA.

    We are currently working on our proposal for our 2nd year Action Plan and budget to answer this call.

    Support for ERNs Coordination & Operation is provided by the European Union 3rd Health Programme.

    The European Union is co-funding 60% of the total budget. The maximum amount of EU contribution is 200 000 euros by ERN.

    More information 

    Database of EU 3rd Health Programme co-funded projects

    Database: info on VASCERN Framework Partnership Agreement 

    Database: info on VASCERN Specific Grant Agreement (March 2017-February 2018)

     

  • Tue
    09
    Jan
    2018
    10:00AM-11:00AM (CET)Videoconference call - Webex
  • Mon
    08
    Jan
    2018
    19:00PM - 20:00PM (CET)Videoconference call - Webex

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