• Thu
    02
    Dec
    2021

    The European Joint Programme on Rare Diseases (EJP RD) Networking Support Scheme (NSS) is now open!

    The scheme will provide financial support to applicants for fostering organization of workshops or conferences for new research networks or existing/expanding research networks to strengthen collaborations and to enable exchange of knowledge.

    Eligible applicants to apply for the NSS are health care professionalsresearchers and patient advocacy organizations from the following countries involved in the EJP RD (in alphabetical order):

    Armenia*, Austria, Belgium, Bulgaria*, Croatia*, Czech Republic*, Denmark, Estonia*, Finland, France, Germany, Georgia*, Greece, Hungary*, Ireland, Israel, Italy, Latvia*, Lithuania*, Luxembourg, Malta*, Norway, Poland*, Portugal, Romania*, Serbia*, Slovakia*, Slovenia*, Spain, Sweden, Switzerland, The Netherlands, Turkey*, United Kingdom.

    The countries that are indicated with an asterisk (*) are usually seen as underrepresented countries.

    At least one Principal applicant and two co-applicants from three different countries mentioned above have to apply together for support of a Networking event.

    Maximum budget for networking event: € 30,000

    The NSS is open on a continuous basis. The applications will be collected on the following date:

    • December 2, 2021 at 14.00 (CET)

    All information, including the call documents, can be found on the EJP-RD website here.

  • Thu
    18
    Nov
    2021
    Sat
    20
    Nov
    2021
    Copenhagen, Denmark

    The 10th International Conference of the International Lymphoedema Framework will take place in Copenhagen, Denmark, from November 18-20th, 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.

    See the preliminary programme here.

    For more information, check out their website here.

  • Thu
    28
    Oct
    2021
    Fri
    29
    Oct
    2021
    Online

    The PIK3CA Related Conditions International Scientific Meeting is hosted and sponsored by CLOVES Syndrome Community and will take place online from October 28th to 29th, 2021.

    This meeting will focus on the diverse range of phenotypes of the spectrum that share a PIK3CA mutation.

    The goals for this meeting are:

    • To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking.
    • To stimulate new ideas.
    • To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
    • To identify the gaps and unmet needs for our heterogenous patient populations.

     

    Professor Miikka VIKKULA, Chair of our Vascular Anomalies Working Group (VASCA-WG), is one of the Scientific Meeting Chairs.

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

  • Mon
    25
    Oct
    2021
    5:00PM-6:30PM (CET)WebEX

    The VASCERN HTAD-WG Monthly Meeting will take place on October 25th, 2021 at 5 pm (Paris time)

  • Fri
    22
    Oct
    2021
    8:00AM-9:00AM (CET)Videoconference call - Webex

    The VASCERN HHT-WG Monthly Meeting will take place on October 22, 2021 at 8 am (Paris time).

  • Fri
    22
    Oct
    2021
    8:30AM-4:00PM (CET)Strasbourg, France

    The ERN Coordinators Group Meeting will take place on October 22nd, 2021 from 8:30 AM to 4 PM (CET) in Strasbourg (France).

  • Wed
    20
    Oct
    2021
    Thu
    21
    Oct
    2021
    Online

    The EURORDIS Round Table of Companies (ERTC) Workshop will take place online on 20-21 October 2021 on the topic of "The impact of the EU regulatory network strategy 2020-2025 on the development of orphan medicines".

    This is your opportunity to join us to discuss and gain insights into new methods to analyse data, new sources of data and changes in the way new Clinical Trials are conducted.

    Register for this free workshop here

    Programme here

     

  • Wed
    20
    Oct
    2021
    4:00PM-5:00PM (CET)Videoconference call - Webex

    The VASCERN VASCA-WG Monthly Meeting will take place on October 20th, 2021 at 4:00 pm (Paris time).

  • Mon
    18
    Oct
    2021
    5:30PM-6:30PM (CET)Videoconference call - Webex

    The VASCERN PPL-WG Monthly Meeting will take place on October 18th, 2021 at 5:30 pm (Paris time).

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