• 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).

  • Wed
    13
    Jan
    2021
    Fri
    15
    Jan
    2021
    Online

    The online IRDiRC Conference & RE(ACT) Congress will take place online from 13-15 January, 2020. Hosted by The BLACKSWAN FOUNDATION, IRDRIC And EJP-RD, this event brings together scientific leaders, patients and policy makers to advance research on rare diseases.

    Register here

    To see the agenda: click here

    To see the time table: click here

    For more information, visit the event website here

  • Mon
    01
    Feb
    2021

    A preliminary announcement for the European Joint Programme on Rare Diseases (EJP RD) Joint Transnational Call (JTC) 2021 has just been released!

    The topic for this next call will be “Social sciences and Humanities Research to improve health care implementation and everyday life of people living with a rare disease”

    Transnational research proposals must cover at least one of the following areas, which are equal in relevance for this call:

    • Health & social care services research to improve patient and familial/household health outcomes
    • Economic Impact of Rare diseases
    • Psychological and Social Impact of Rare diseases
    • Studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention.
    • e-Health in rare diseases: Use of innovative technology systems for care practices in health and social services
    • Development and enhancement of health outcomes research methods in rare diseases
    • Effects of pandemic crisis and the global outbreak alert and response on the rare disease field, and the emergence of innovative care pathways in this regard.

    Each consortium submitting a proposal must involve at least three principal investigator partners from at least three different countries that are joining this Call JTC 2021. The maximum duration of the project is 3 years.

    The call is scheduled to open in December, with a pre-proposal submission deadline in February. More information to come soon...stay tuned!

    Find the full preliminary announcement here

  • Wed
    24
    Feb
    2021
    Online

    The EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives. This year, the tenth anniversary special online edition of the EURORDIS Black Pearl Awards will take place during the evening of Wednesday, 24 February 2021.

    The call for photo submissions for the Photo Award are now open until the 31st of January 2021. Submit your photo here

    More information here

  • Thu
    06
    May
    2021
    Sat
    08
    May
    2021
    Copenhagen, Denmark

    The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from May 6-8, 2021 (new dates due to COVID-19).

    Pernille Henriksen, ePAG Co-Chair for PPL WG, will be present at this event and will give a presentation entitled Infections; the experiences, the fear and the solutions from a patient point of view for the patient day on Saturday, May 8th, 2021.

    See the preliminary programme here.

    For more information, check out their website here.

  • Mon
    14
    Jun
    2021
    Wed
    16
    Jun
    2021
    Barcelona, Spain

    Due to the COVID19, the EMBO Workshop on Vascular Malformations has been postponed. The event was due to take place from April 1st to 3rd, 2020 and will now take place from June 14th -16th, 2020 in Barcelona, Spain.

    Professor Miikka VIKKULA, Chair of the VASCERN Vascular Anomalies Working Group (VASCA WG), will be one of the speakers!

    REGISTRATION DEADLINE - 17 May 2021

    ABSTRACT SUBMISSION DEADLINE - 17 May 2021

    PAYMENT DEADLINE - 1 June 2021

    For more information on this event (programme and registration), take a look here.

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