• 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.

  • 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
    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
    13
    Jan
    2021
    Sat
    16
    Jan
    2021
    Berlin, Germany

    The International Congress Of Research On Rare And Orphan Diseases, co-organized with IRDiRC and EJP-RD, has been postponed due to the COVID-19. The event was due to take place from March 11th to 14th, 2020 and will now take place from January 13th to 16th, 2021.

    • To see the agenda: click here
    • To see the time table: click here
    • To register: click here
  • Mon
    30
    Nov
    2020
    9:00AM-1:00PM (CET)Online

    The European Medicines Agency (EMA) is organising a Workshop on Support for Orphan Medicines Development which will take place online on November 30th, 2020 from 9AM-1pm.

    This virtual event aims to encourage early and efficient interactions with the regulators by highlighting pre-marketing support in medicine development in rare diseases. Existing tools such as orphan designation, protocol assistance and PRIME scheme will be highlighted and explained in the context of early product development strategy.

    For the agenda click here

    To register click here

    For more information click here

  • Fri
    27
    Nov
    2020
    9:00AM-4:00PM (CET)Videoconference call - Webex

    The ERN Coordinators Group Meeting will take place online on November 27th, 2020 from 9 AM to 4 PM (CET). Professor Jondeau and Marine Hurard will be attending.

  • Mon
    23
    Nov
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN HTAD-WG Monthly Meeting will take place on November 23rd, 2020 at 5 pm (Paris time).

  • Wed
    18
    Nov
    2020
    3:45PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on November 18th, 2020 at 3:45 pm (Paris time).

  • Mon
    16
    Nov
    2020
    1:00PM-2:30PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on November 16th, 2020 at 1:00 PM (CET). Romain ALDERWEIRELDT will be representing VASCERN as the Chair of this WG.

  • Mon
    16
    Nov
    2020
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on November 16th, 2020 at 5:30 pm (Paris time).

  • Tue
    10
    Nov
    2020
    10:00AM-11:30AM (CET)Zoom

    The VASCERN ePAG Monthly Meeting will be taking place on November 10th, 2020 from 10 am to 11:30 am (Paris time).

  • Mon
    09
    Nov
    2020
    5:00PM-6:00PM (CET)Videoconference call - Webex

    The VASCERN MSA-WG Monthly Meeting will be taking place on November 9th, 2020 at 5 pm (Paris time).

  • Sat
    07
    Nov
    2020
    Sun
    08
    Nov
    2020
    Paris

    Due to the recent global updates with COVID-19, the Society has decided to postpone the European Learning Conference and HEDGE study screening in Paris, France, which was due to take place March 21-22, 2020.⁠

    Both the conference and the HEDGE screening have been rescheduled for November 7-8, 2020. November 7, 2020, will be health professionals day (in place of March 21) and November 8, 2020, will be community day for patients, their families and caregivers (in place of March 22).⁠

    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.

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

    For more information, click here.

  • Thu
    05
    Nov
    2020

    The Connecting Europe Facility (CEF) Telecom -2020-2 eHealth call (implemented by The Innovation and Networks Executive Agency (INEA)) was published on June 30th, 2020!

    Read the call document here

    The actions funded under this call for proposals should contribute to:

    • The continued use of the ERN Collaborative Platform (ECP) and of the Clinical
      Patient Management System (CPMS), which facilitate access to highly
      specialised knowledge and care for patients suffering from rare and complex
      diseases.
    • The improvement of current functionalities and adding of new functionalities to
      the ERN Clinical Patient Management System, which will enhance the possibility
      to collect and analyse clinical data across borders to support public health and
      research, and also better adapt the CPMS to the ERN specific clinical needs.
    • The promotion of the European Reference Networks within the medical
      community by suitable learning and training activities.

     

    Deadline for submission of proposals is Thursday 5 November 2020 (5PM Brussels time).

    Evaluation of proposals November 2020 – January 2021 (indicative)

    Consultation of the CEF Committee March – April 2021 (indicative)

    Adoption of the Selection Decision April 2021 (indicative)

    VASCERN will be submitting a proposal in order to ensure the continuation and improvement of the IT services offered to our members (helpdesk, eLearning activities, monitoring system support, and other IT related activities).

    A 2020-2 CEF Telecom call virtual Info Day will occur on 16 July 2020.

    More information on the call can be found here

  • Thu
    05
    Nov
    2020
    3:00PM-4:00PM (CET)Videoconference call - Webex

    The VASCERN Registry Technical Teams Working Group Meeting will take place online on Thursday November 5th, 2020 from 3 PM to 4 PM (CET).

  • Wed
    04
    Nov
    2020
    5:00PM-6:30PM (CET)GoToMeeting

    The Internal ERN Coordinator's Group Meeting will take place online on November 4th, 2020 at 5:00PM (CET).

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