News


  • Report on eHealth in the WHO European Region

    12/12/2016

    See the report on the WHO website

  • 11 November 2016: inauguration of the NGO Committee for Rare Diseases

    09/11/2016 - USA

    The inauguration will be at the United Nations Headquarters in New York.
    Watch live stream: Global Gathering for Rare Diseases

  • EUROPLAN on twitter

    27/10/2016

    Follow us : @EUROPLANproject

  • Article: State of rare disease management in Southeast Asia

    30/09/2016

    An article published in the Orphanet Journal of Rare Diseases consists of information from six Southeast Asian countries on management of rare diseases based on the World Health Organization’s framework for action in strengthening health systems. See the full article

  • FDA providing $2 million in new grants for natural history studies in rare diseases

    29/09/2016 - U.S.

    The aim is to collect data on how specific RD progress in individuals over time so that knowledge can inform and support product development and approval. Grant applications will be due Oct. 14, 2016
    For further information visit the website

  • France: 3rd National Plan for Rare Diseases

    30/06/2016 - Paris

    The Minister of Social Affairs and Health, Marisol Touraine, has announced that a third national plan for rare diseases would soon be launched, continuing from the previous two plans. Read the press release.

  • Yann Le Cam appointed to Board of the European Medicines Agency

    29/06/2016

     Read his interview on EURORDIS website

  • Evaluation of the 2nd French national Plan for Rare Diseases

    16/06/2016 - PARIS

    A mixed report but recommending a 3rd Plan. Read the document.

  • Guide to information on human medicines evaluated by EMA

    What the Agency publishes and when
    08/06/2016 - EU

    This guide describes the different types of information the Agency currently publishes for both centrally and non-centrally authorised medicines, as well as publication times and location on EMA’s website.  It aims to help stakeholders know what kind of information to expect on medicines undergoing evaluations and other regulatory procedures. The same information described in this document is presented in a tabulated format in the Annex.
    Whilst reflecting the current practice, the guide is not intended to provide an exhaustive list of EMA publications, and EMA may at its discretion publish additional documents as appropriate. Other nonconfidential documents held by EMA which are not published may be provided to stakeholders upon request.

  • Initiative on Rare and Undiagnosed Diseases (IRUD)

    07/06/2016 - Japan

    AMED launched the Initiative on Rare and Undiagnosed Diseases(IRUD). It's the nationwide consortium networking patients, medical doctors at hospitals and community clinics, and researchers in order to integrate their efforts and expertise.

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