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. SMA Europe rings the changes!

    SMA Europe held its Annual General Meetings virtually, between 10th and 12th June 2021.

    A five-year strategy was approved, containing exciting new projects and initiatives centred around 5 pillars:

    • Research
    • Therapy and care
    • Healthcare systems, policy and access
    • Capacity building
    • Communication and outreach

    Importantly, elections were held for 4 out of 5 positions on the Board. We are delighted to announce that Nicole Gusset was appointed President, stepping-up from her interim position. In addition, we are equally delighted to welcome Yasemin Erbas, one of our representatives from SMA Belgium, as vice-President. Yasemin brings with her invaluable experience as an assistant Professor in Psychology, working at the University of Tilburg in The Netherlands and as a passionate patient advocate. Yasemin has a son who lives with Type 1 SMA. Finally and no means least, Olga Germanenko, our representative from SMA Family Foundation Russia joins Marie-Christine Ouillade as an Ordinary member of the Board.

    We are also very happy to welcome our 24th member organisation, Associaçao Portuguesa de Doentes Neuromusculares (APN) from Portugal. The APN will be represented by Joaquim Brites, the organisation’s President and Ana Gonçalves, vice-President.