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

     

  • 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, 2019 at 8 am (Paris time).

  • Mon
    16
    Dec
    2019
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT WG monthly meeting #33 will take place on December 16th, 2019 at 8 am (Paris time).

  • Fri
    13
    Dec
    2019

    A preliminary announcement on the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2020 has just been released! The topic for this call is "Pre-clinical research to develop effective therapies for rare diseases"

    Research proposals must cover at least one of the following areas:

    1. Development of novel therapies in a preclinical setting (including small molecules, repurposing drugs, cell and gene advanced therapies) focusing on condition(s) with unmet medical needs
    2. Use of disease models suitable for medicinal product’s development according to EMA guidelines
    3. Development of predictive and pharmacodynamics (PD) biomarkers (with appropriate analytical methods e.g. OMICS) in a preclinical setting (e.g. in the validated model or in pre-collected human samples) for monitoring the efficiency of the therapy. The model chosen must mimic the human diseases and be transposable so that the biomarker identified in animals can be valid for humans
    4. Proof of principle studies fostering an early (pre-clinical) stage of drug development (excluding interventional clinical trials of phase 1-4).

    The maximum duration of the project is three years and the consortium submitting a proposal must involve 4-6 (up to 8, if inclusion of partners from underrepresented countries or Early Career Researchers) eligible principal investigator partners (no more than two from the same country).

    There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals.

    The call is scheduled to open on: December 13, 2018.

    Pre-proposal submission deadline: 12th February 2020.

    For more information on this call, please click here

     

  • Tue
    10
    Dec
    2019
    10:00 amZoom

    The Monthly ePAG Meeting will take place on December 10th from 10am to 11:30am (CET time zone).

  • Mon
    09
    Dec
    2019
    1:00 pmwebex

    The VASCA Lymphangiography task force meeting will take place on December 9th at 1 pm (Paris time, UTC +1).

  • Wed
    04
    Dec
    2019
    6:00 pmwebex

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

  • Wed
    27
    Nov
    2019
    10:00 amWebex

    The  webinar on the presentation of the repository of the ERNs document templates and taxonomy will take place on Wednesday 27 November 2019, 10h00-11h30 (GMT+1).

  • Tue
    26
    Nov
    2019
    Fri
    29
    Nov
    2019
    Maastricht, The Netherlands

    The EJP-RD is organising a Workshop and Hackathon: "Molecular pathways for rare disease (FAIR) data analysis" that will take place from November 26-29, 2019  at the University of Maastricht in The Netherlands.

    All information on this event and registration 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).

  • 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

  • Wed
    20
    Nov
    2019
    3:45 pmWebex

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

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