• Fri
    15
    May
    2020
    Sat
    16
    May
    2020
    Stockholm, Sweden

    The 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will be held at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 to 16 May 2020.

    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. We will address the issues that matter today to rare disease patients and those who support them, while also anticipating the needs of tomorrow's rare disease patients and families so that innovative and sustainable responses can begin to be developed.

    The European Joint Programme on Rare Diseases serves as official partner of the conference. For more information, click here.

  • Tue
    12
    May
    2020
    Fri
    15
    May
    2020
    Vancouver, Canada

    The International Society for the Study of Vascular Anomalies (ISSVA) will host ISSVA 2020, the 23rd  Workshop for the Study of Vascular Anomalies,  in the beautiful city of Vancouver, in British Columbia, Canada from May 12-15, 2020.

    The Scientific Program will be a venue to present the latest advances in research and science in vascular anomalies.  It will also feature introductory and advanced sessions that attendees can use to increase their knowledge in the fundamentals and advanced topics in the field.  ISSVA 2020 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.

    The ISSVA Workshop has continuously grown thanks to your dedication to the field and participation in the meeting. We invite you to participate in ISSVA 2020 to help us continue this trend of knowledge sharing through oral presentations, difficult cases, and poster sessions.

    More information here

  • Sat
    21
    Mar
    2020
    Sun
    22
    Mar
    2020
    Paris

    The Ehlers-Danlos Society brings together the leading world experts to discuss the latest medical and scientific information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

    The conference covers two separate days: March 21, 2020 is Health Professionals Day and March 22, 2020, is Patients Day for those who have EDS and HSD and their families.

    For both Professionals Day and Patients Day, sessions will be translated into Spanish, French, German, Dutch, and Italian.

    For more information, click here.

  • Wed
    11
    Mar
    2020
    Sat
    14
    Mar
    2020
    Berlin, Germany

    The International Congress Of Research On Rare And Orphan Diseases co-organized with IRDiRC and EJP RD will take place from March 11-14, 2020 in Berlin, Germany.

    • To see the agenda: click here 
    • To see the time table : click here 
    • To make your registration : click here 

     

  • Fri
    29
    Nov
    2019
    Glaziers Hall, London Bridge, London UK

    To get more information, please click here

  • Thu
    07
    Nov
    2019
    Fri
    08
    Nov
    2019
    Radisson Blu Royal Hotel

    VASCERN's annual seminar, VASCERN Days 2019, will take place in Brussels, Belgium and will run from Novembre 7th, starting at 8:30 am, to November 8th, finishing at 4:30pm.

    The meeting will consist of several plenary sessions (including the annual board meeting) and two 4 to 5 hour long Rare Disease Working Group sessions as well as a dedicated VASCERN ePAG meeting. About 100 participants will be in attendance including more than 60 HCPs representatives from 37 expert teams, 14 ePAGs from 14 Patient Organisations, and 8 stakeholders representing Orphanet, DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases), Eurordis, EJP-RD and more!

    General overview :

    Day 1: Thursday, November 7th, 2019

    8.00-8.30: registration & welcome coffee

    8.30-13.00: annual board meeting

    13.00-14.00: networking lunch

    14.00-18.00: Rare Disease Working Groups (RDWG) - parallel sessions

    20:00 onwards:  networking evening dinner at the restaurant  (The Kwint, Mont des Arts 1, 1000 Brussels, belgium)

    Day 2: Friday, November 8th, 2019

    8.00-8.30: registration & welcome coffee

    8.30-9.30: sharing of RDWG best practices and ideas in the plenary

    9.30-15.30: Rare Disease Working Groups - parallel sessions, including 2 hours of interRDWGs sessions, and 1 hour break for lunch

    15.30-16.30: Debriefing and conclusions in plenary session

    16h30 onwards: departure of participants

    We look forward to our annual meeting and will be sure to report on the various news from the day via our social media channels (using the hashtag #VASCERN Days2019)!

  • Tue
    05
    Nov
    2019
    Wed
    06
    Nov
    2019
    Paris

    The RARE 2019 Meetings is the 6th edition of an event organised every two years to promote a health and research policy at the service of people with rare diseases.

     

    The RARE 2019 Meetings will be held on 5 & 6 November 2019 at the Cité des sciences et de l'industrie:

    City of Science and Industry
    30, avenue Corentin-Cariou
    75019 Paris

    Opening of the reception:

    Tuesday, November 5: 7:30 am - 6:30 pm

    Wednesday, November 6: 7:30 am - 5:30 pm

    For more information, click here.

  • Mon
    28
    Oct
    2019
    5:00 pmwebex

    HTAD WG monthly meeting from 5pm to 6pm

  • Fri
    25
    Oct
    2019
    8:00 amwebex

    VASCERN Communication Advisory Task Force meeting

  • Mon
    21
    Oct
    2019
    5:30 pmwebex

    Pediatric & Primary Lymphoedema Working Group  Monthly Meeting (PPL Monthly Meeting)

    from 5:30 pm to 6.30 pm (UTC+1)

  • Wed
    16
    Oct
    2019
    3:45pm (UTC+1)webex

    VASCA-Working Group Monthly meeting from 3:45 pm to 5 pm

  • Fri
    11
    Oct
    2019
    Sun
    13
    Oct
    2019
    Istanbul, Turkey

    The first Turkish lymphoedema congress will be held between 11 – 13 October 2019 in İstanbul, Turkey.

    The first two days there will be panels related with all aspects of lymphedema and the last day, workshops will be held on topics including; upper and lower extremity lymphedema, kinesiological bandaging in lymphedema, wound care and diagnostic ultrasound in lymphedema.

    The event has an international dimension with international participation.

    For more information, click here. 

  • Tue
    08
    Oct
    2019
    10:00 amZoom

    VASCERN European Patient Advocacy Group Monthly meeting

  • Sat
    05
    Oct
    2019
    1:30 pmBrussels

    The Fondation 101 Génomes is hosting a gala on Saturday, the 5th of October 2019 at the Palais des Académies to celebrate the 20 year anniversary of the Association Belge du Syndrome de Marfan (ABSM). It will start at 1:30 pm.

    To learn more about the programme and to register click here.

  • Thu
    03
    Oct
    2019
    5:00 pmwebex

    VASCERN eHealth WG monthly virtual meeting

  • Wed
    02
    Oct
    2019
    6:00 pmwebex

    MSA-WG Monthly Virtual Meeting

  • Mon
    30
    Sep
    2019
    Brussels

    The conference will highlight the results of the current and previous EU Health Programmes and present the new approach in the future Multiannual Financial Framework for 2021-2027.

    For more information, click here

  • Mon
    30
    Sep
    2019
    8:00 amwebex

    HHT Working Group Monthly Meeting #30 from 8 am to 9 am (Paris time)

  • Mon
    23
    Sep
    2019
    Sun
    29
    Sep
    2019

    The European Biotech Week celebrates biotechnology, an innovative and vibrant sector launched by the discovery of the DNA molecule back in 1953. The first European Biotech Week that took place in 2013 marked the 60th anniversary of this pivotal moment in history.

    To have more information : click here

  • Mon
    23
    Sep
    2019
    Sat
    28
    Sep
    2019
    Buenos Aires, Argentina

    The International Society of Lymphology's (ISL's) 27th International Congress of Lymphology will take place from September 23-28, 2019 in Buenos Aires, Argentina.

    VASCERN members speaking at this event include Prof Miikka Vikkula and Prof Laurence Boon (VASCA-WG Chairs) and Prof Vaughan Keeley (PPL-WG member).

    To see the full programme click here

    For more information on this event, click here

     

  • Mon
    23
    Sep
    2019
    Fri
    27
    Sep
    2019
    Istituto Superiore di Sanità, Rome, Italy

    The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).

    Professor Guillaume Jondeau and 2 members of the coordinating HCP APHP Bichat-Claude Bernard, will attend this event.

    For more informations : click here 

  • Mon
    23
    Sep
    2019
    17:00 - 18:00webex

    HTAD WG Monthly Meeting

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