About Us

SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. We work to bring effective treatments and optimal care to everyone living with SMA.

Together, through greater understanding, we will create a better world for all those living with SMA.

All together. One goal.


United, at European level and in collaboration with all stakeholders, will we achieve our vision of creating a better world for all those living with SMA. This is our reason for being, above all else. It infuses everything we do and is what we invite others to help us achieve.

Nicole Gusset, CEO of SMA Europe

What we do


Setting priorities, promoting, funding and generating patient-relevant research.


Using evidence-based advocacy, we represent the voice of patients in decisions that affect them.


We campaign to raise awareness of SMA and promote the interests of our community.

Our priorities

  • Research
  • Therapy & Care
  • Healthcare Systems, Policy & Access
  • Capacity Building
  • Communications & Outreach

How we work

Elevating the patients’ voice

We always put the voice of people living with SMA and their families at the heart of everything we do:

  • Empowering our member organisations to advocate and campaign for them at a national level; and
  • Influencing healthcare, pharmaceutical, and regulatory decision-makers to involve them at a European level.

Only through true representation of the SMA community – the unique wants, experiences and aspirations of the people behind the condition – will their voices be heard and needs be met.

Our members

Our members are national patient organisations led by people living with SMA and their families.

Together we represent a diverse mix of nationalities, experiences and backgrounds and have a unique understanding of the impact of SMA. We are determined to make a positive difference to the lives of all those who are also living with SMA.

Our members













Who we are

Our structure & team

Our delegates, board, volunteers, and staff are committed to our purpose, and to make progress every day. We are relentlessly positive and confident that anything is possible when we work together.

Our delegates are volunteer representatives of our member national SMA organisations. All together, they comprise our General Assembly. Our Board is composed of elected General Assembly members and their positions are honorary. Our work is also supported by volunteer Committees and individual volunteers who live with SMA or whose family members live with SMA.

Meet our people

More about us

Resources & Pages