About SMA Europe

SMA Europe is an umbrella organisation, founded in 2006, which includes Spinal Muscular Atrophy (SMA) patient and research organisations from across Europe.

SMA Europe is a non-profit umbrella organisation which consists of 20 SMA patient and research organisations from 19 countries across Europe.

Our members differ in terms of how long they have been established, in size and also in scope. SMA Europe is staffed by one person.

The SMA Europe Board meets four times a year and currently consists of 19 board members and 14 deputy board members.

Our aims are:

  • To improve the quality of life of people who live with SMA,
  • To accelerate translational research pathways in SMA,
  • To bring effective therapies to patients in a timely and sustainable way
  • Encourage optimal patient care.

Co-operation between these European organisations is meant to enhance and support the existing efforts of each association by identifying areas for collaboration that are mutually advantageous:

  • to improve the quality of life of individuals with Spinal Muscular Atrophy,
  • to promote the interests of SMA patients in European health policy;
  • to raise awareness of SMA with the general public, healthcare practitioners, scientists and industry;
  • to identify, develop, promote and implement the best practice for SMA;
  • to promote and sustain scientific and medical research in all fields of Spinal Muscular Atrophy;
  • to increase collaboration between member countries.