• Thu
    22
    Oct
    2020
    Sat
    24
    Oct
    2020
    Online

    Due to the COVID-19, VASCERN's annual seminar, VASCERN Days 2020, will take place online from October 22-24th, 2020!

    This year, we will come together using the Whova event app and Webex for our virtual meeting sessions.

    We look forward to welcoming our participants to this online 3-day seminar! Currently we are expecting 76 Healthcare Provider (HCP) representatives, 11 representatives from our 7 Affiliated Partners and 20 European Patient Advocate Group (ePAG) patient advocates, as well as 26 invited stakeholders representing DG SANTE (European Commission), FAVA-Multi (The French Network for Rare Vascular Diseases)Eurordis, members of our VASCERN Registries Project team, EJP-RDthe French Ministry of HealthAP-HP Bichat Hospital and more!

    Access the full, detailed program here

     

    An overview of the agenda for this 3-day online seminar can be seen below:

    Day 1: Thursday, October 22nd

    8.45-12.05 VASCERN ANNUAL BOARD MEETING

    9.00-9.20 VASCERN’s Management & Coordination

    9.20-9.35 VASCERN’s Enlargement & Cooperations

    9.35-9.45 Inter-ERN Working Group on Legal & Ethical Issues and Relations with Stakeholders: cooperation with the industry

    10.00-11.00 Work Packages

    10.00-10.35 Implementation (7’ per RDWG Chair)

    10.35-11.00 Q&A, sharing best practices & inter-RDWGs projects

    11.00-11.15 Q&A and approval by the Board

    11.30-11.45 European Patient Advocacy Group (ePAG) views, projects & new developments, including Q&A

    11.45-12.05 Clinical Patient Management System (CPMS)

    13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS

    Including 14.30-16.00: RDWGs CPMS clinical case discussions (clinicians only)

    16.00-16.15 Council meeting (Chairs only) to select the 5 topics for the Day 2 Brainstorming plenary session

    Day 2: Friday, October 23rd

     8.30-9.00 Research: European Joint Programme on Rare Diseases (EJP RD): calls and opportunities & Q&A

    9.15-9.45 VASCERN’s Registry WG

    10.00-11.00 Brainstorming on 5 strategic topics selected by the RDWGs (12’by topic, each topic discussion moderated by the Chair of the RDWG)

    11.45-12.15 Pregnancy Working Group chaired by Julie De Backer

    13.00-16.00 RARE DISEASE WORKING GROUPS - PARALLEL SESSIONS, including interRDWG sessions

    16.00-16.30 Board plenary: RDWGs’sessions summary outcomes & introducing the way forward (6’ per RDWG)

    Day 3: Saturday, October 24th

     9.00-12.00 PPL & VASCA WORKING GROUPS - PARALLEL SESSIONS

    PPL: CPMS Clinical Case Discussions (clinicians only)

    VASCA: Implementation of Work Packages

     12.30-13.30 - European Patient Advocacy Group (ePAG) separate wrap-up

     

     

  • Tue
    27
    Oct
    2020
    10:30AM-12:00PM (CET)Videoconference call - Webex

    The monthly meeting of this interERN Working Group will take place online on October 27th, 2020 at 10:30 AM (CET). Romain ALDERWEIRELDT will be representing VASCERN as the Chair of this WG.

  • 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).

  • 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.

  • 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).

  • 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
    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).

  • 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
    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).

  • Thu
    26
    Nov
    2020
    Fri
    27
    Nov
    2020
    Brussels, Belgium

    The ERN Coordinators Group Meeting will take place on November 26-27th, 2020 in Brussels, Belgium. Professor Jondeau and Marine Hurard will be attending.

  • 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

  • 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
    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

  • 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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