In April this year, a new 2-year strategy was set and a new working structure established.
Our new structure
- 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
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.
We are coordinated by our member of staff, Vanessa Christie-Brown.
- 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.
Two new organisations have been welcomed into SMA Europe. They are:
- Stop SMA Macedonia, represented by Denica Velkovska
- SMÁci from the Czech Republic, represented by Daniel Kostan
- 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