• Mon
    21
    Oct
    2019
    5:30 pmwebex

    The Pediatric & Primary Lymphoedema Working Group  Monthly Meeting (PPL Monthly Meeting) from 5:30 pm to 6.30 pm.

  • Mon
    28
    Oct
    2019
    5:00 pmwebex

    The HTAD WG monthly meeting will take place from 5 to 6pm

  • 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.

  • Wed
    06
    Nov
    2019
    6:00 pmwebex

    The MSA WG Monthly Meeting will take place on November 6th at 6pm.

  • 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)!

  • Thu
    07
    Nov
    2019
    8:45 am to 4:30pmIstanbul, Turkey

    The European Joint Programme on Rare Disease Information Day & Brokerage Event will take place on November 7th from 8:45 am to 4:30pm in Istanbul, Turkey.

  • Tue
    12
    Nov
    2019
    10:00 amZoom

    The Monthly ePAG TC Meeting will take place on November 12th from 10am to 12pm.

     

  • Mon
    18
    Nov
    2019
    5:30 pmwebex

    The PPL-WG Monthly meeting will take place on November 18th from 5:30pm to 6:30pm (Paris time).

  • Wed
    20
    Nov
    2019
    3:45 pmWebex

    The VASCA Monthly meeting will take place on November 20th from 3:45pm to 5pm (Paris time).

  • Thu
    21
    Nov
    2019
    Fri
    22
    Nov
    2019
    Paris, France

    Paris Lymphology Days will take place from November 21-22nd, 2019 in Paris, France. It will be hosted by Dr. Stéphane Vignes (PPL WG Member) and will feature numerous presentations, including one  by VASCA WG Chair Prof Miikka Vikkula on the genetics of lymphedema, as well as practical workshops.

    To read the full program (in French) click here

    For more information (in French) click here

  • Mon
    25
    Nov
    2019
    5:00 pmwebex

    The HTAD WG Monthly meeting will take place on Monday, November 25th from 5 to 6 pm (Paris time).

  • Fri
    29
    Nov
    2019
    London UK

    The course "challenges and choices in aortic valve and root surgery in younger patients" will take place at Glaziers Hall, London Bridge, London UK on November 11th, 2019.

    Dr. Yaso Emmanuel (HTAD-WG member) is one of the course organisers for this event.

    For more information, please click here

  • Fri
    29
    Nov
    2019
    8:00 am to 5 pm9 Montague Close, London SE1 9DD

    Dr Emmanuel YASO from our HTAD working group is organising a meeting about the "Challenges and choices in aortic valve and root surgery in younger patients" on November 29th at Glaziers Hall, London. This event will be held from 8 am to 5pm (London time).

     

  • Wed
    04
    Dec
    2019
    6:00 pmwebex

    The MSA WG Monthly Meeting will take place on December 4th from 6 to 7pm (Paris time).

  • Tue
    10
    Dec
    2019
    10:00 amZoom

    The Monthly ePAG Meeting will take place on December 10th from 10am to 12pm (CET time zone).

  • 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 register (early registration until November 30th, 2019) : click 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.

  • 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

  • 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.

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