SMA Europe is an umbrella organisation which unites 26 patient and research organisations focusing on spinal muscular atrophy (SMA) from 24 countries across Europe. The member organisations differ in terms of how long they have been established, in size and also in scope of activities. SMA Europe is managed by a Board, which meets monthly and two members of staff.

SMA Europe strives for earlier diagnosis, effective treatments and optimal care for people living with SMA. We do this by elevating the patients’ voice, by empowering member organisations to advocate and campaign at a national level and by harnessing that network to advance research and influence stakeholders at a European level.

SMA Europe aims to:

  • Represent the interests of people with SMA among all stakeholders in European health policy

  • Develop a strong evidence base for the needs and wants of patients and their role in research

  • Support, stimulate and promote patient-relevant research, drug development and clinical trials
  • Ensure patients across Europe receive timely and continuous access to diagnosis, treatment and care
  • Communicate and promote comprehensive quality information about SMA among all relevant stakeholders
  • Provide quality information, educational and outreach programmes to member organisations, including knowledge transfer, information exchange and best practices with and among member organisations
  • Collaborate on projects for the benefit of the SMA community, also on a global level
  • Build and maintain a responsible, sustainable and impactful organisation with one, unified, goal.

More information can be found on

SMA Belgium

SMA Belgium is an umbrella organisation created by the SMA working groups of Spierziekten Vlaanderen (Flemish neuromuscular organisation) and ABMM (French neuromuscular organisation).

SMA Belgium is dedicated to building communication networks between families with SMA about progress in scientific research, available treatment and public assistance.

Finally, but not least, to strengthen the patient’s voice in the drug development process, to collaborate with various stakeholders to optimise the drug-development path from the laboratory to the patient.