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. A New Team to Deliver our Ambitious New Strategy

    SMA Europe announces a series of appointments to deliver the ambitious strategy announced earlier this summer. This new strategy consists of 5 pillars of activity: Research; Therapy & Care; Health Care Systems, Policy & Access; Capacity Building; Communications and Outreach.

    • Raquel Castro joins us as Senior Operations Manager to run SMA Europe’s secretariat, develop processes and procedures as well as ensure growth. She will be assisted by Carolina Pachecoy, our existing Admin Support staff. Previously, Raquel led capacity building programmes and social projects at the European rare disease organisation, Eurordis, for a number of years. Raquel and Carolina are both based in Spain.
    • Laura Gumbert manages our access project, OdySMA, which forms part of our work on Healthcare Systems, Policy & Access. Laura recently completed a PhD on a quantitative analysis of the caregiver burden of caring relatives of people living with one of the rare neuromuscular diseases: Duchenne muscular dystrophy, Becker Kiener muscular dystrophy or spinal muscular atrophy. Laura lives in Germany.
    • Evgeniya Vedernikova is our new Research Officer, working on pan-European surveys and daily life studies (SMA DaLy). She joins Vanessa Christie-Brown in the Research Team, who left her previous coordination role to manage the Research Programme. Evgeniya has a Master’s Degree in Psychology and lives in Russia.

      Our President, Nicole Gusset, said:

      I am extremely pleased that we have a powerful team that will now support the SMA Europe Board and the other volunteers of our organisation. Together we will strive to achieve our goal: united to create a better world for all living with SMA