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. Our 2018 – 2020 activities and initiatives

    In April this year, a new 2-year strategy was set and a new working structure established.

    Our new structure

     

    Elections

    • Presidency: Mencía de Lemus from our Spanish organisation, FundAME
    • vice-Presidency: Nicole Gusset from our Swiss organisation, SMA Schweiz
    • Treasury: Inge Schwersenz from our German organisation, DGM

     

     

    Executive Committee

    As SMA Europe continues to grow, it has become necessary to reorganise ourselves. As such, we have created an Executive Committee, which is composed of: Mencía de Lemus, Nicole Gusset, Inge Schwersenz, Marie-Christine Ouillade & Kacper Ruciński.

    Coordination

    We are coordinated by our member of staff, Vanessa Christie-Brown.

    Vanessa Christie-Brown

    Working Structure

    • Working groups: We are organised into Working Groups, in order to deliver objectives set by the full board of members.
    • Scientific Advisory Board (SAB) – SMA Europe relies on a voluntary scientific advisory board (SAB), composed of an international group of 12 renowned neuroscientists and neurologists with particular expertise in spinal muscular atrophy.

    New members

    Two new organisations have been welcomed into SMA Europe. They are:

     

    Our objectives for 2018 – 2020

    • A new call for research proposals
    • A new scientific & clinical congress on SMA
    • Contributing to registries & databases through patient-centered outcome measures (PCOMs)
    • A family version of the newly revised standards of care
    • An audit of clinical trials centres in Europe

    Please see our work for further information