News

The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.

  1. New President and vice-President for SMA Europe announced

    A new president and a new vice-President for SMA Europe have been elected.

    SMA Europe held elections for a new President, a new vice-President as well as for a Treasurer, at their annual meeting in April 2016.

    We are delighted to announce that:

    Marie-Christine Ouillade President of SMA Europe

    Marie-Christine is the mother of a girl living with SMA. An engineer by day, she is also a member of the AFM Board of Directors, AFM international committee and TREAT-NMD Project Ethics Council.

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    Mencia de Lemus Belmonte

    Mencía has 2 children with SMA Type 2. In September 2015, she was elected President of Fundación Atrofia Muscular Espinal (FundAME), which she represents on the SMA Europe Board. Her role within FundAME includes setting the strategy to reach the organisation’s goals and to take charge of relations with researchers, clinicians, Pharma and other organisations.

    • Inge Schwersenz remains SMA Europe’s Treasurer.

    Inge Schwersenz SMA Europe TreasurerInge Schwersenz is a member of the Deutsche Gesellschaft für Muskelkranke (DGM), the German Society for Muscular Dystrophy. Inge  has a son with Spinal Muscular Atrophy and wants to make sure that patients in clinical trials are not exposed to any harm and their confidential data are truly protected. On the other hand, she wants to make sure that there are no unreasonable delays in promising clinical trials and finally market authorisation (regulatory agencies, approval in the single countries and reimbursement from the health insurances).   Another motivation is to see standards of care applied in every country. Inge is a member of the RD Patient and Ethics Council (RD-PEC) and a member of the DITA Taskforce (Drug Information, Transparency and Access) at Eurordis.