SMA Europe is an independent, not-for-profit charitable organisation, registered under German law and entirely funded by its member organisations. Our budget is devoted to our core activities: funding research into spinal muscular atrophy through our yearly Call for Research Proposals, accelerating therapy development and promoting patient care.
You can meet our board member here.
The General Assembly is composed of volunteer representatives of our member organisations. Each organisation has a member and a deputy.
The Board is composed of elected General Assembly members and their positions are honorary. Together, they have a joint responsibility:
The President of SMA Europe was elected in April 2018 and has been a member of the General Assembly for 8 years. She is responsible for:
The Vice-President of SMA Europe has been a board member for 5 years. She is responsible for:
SMA Europe is a respected and well-known European umbrella organisation. Our members are representatives of our member national SMA organisations. Members of our Board are members of national organisations who are full members of SMA Europe and who have several years’ experience of SMA Europe.
General Assembly members are long-term members. Board members are elected by the board at our AGM for a two-year term.
SMA Europe is a charitable organisation registered in Freiburg im Breisgau, Germany and governed by German law.
Read our Statutes here.
Our code of practice for relationships with the pharmaceutical industry can be found here.
SMA Europe receives on average approximately €22,000 a year from its membership fees. The other forms of funding we currently receive are voluntary donations from our member organisations towards our Call for Research Proposals (64%). We also have received a small amount of sponsorship from the treatment industry.
Our partners are companies and organisations of high standing and reputation, all of whom agree with SMA Europe’s overall strategic direction and help support the integrity of the organisation. SMA Europe has adopted the EMA Code of Practice and partnership is established on shared interest, transparency, trust and mutual benefit.
For more information, please contact Vanessa Christie-Brown, our Coordinator.
Sources of income 2018