SMA EuropeSMA Europe is an umbrella organisation which unites 24 patient and research organisations focusing on spinal muscular atrophy (SMA) from 23 countries across Europe. The member organisations differ in terms of how long they have been established, in size and also in scope of activities.
The representatives of SMA Europe member organisations and their deputies meet on a quarterly basis and currently consists of 24 members and 20 deputy members. It is managed by an elected Board 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.
Its main tasks and goals are 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 regarding SMA among all relevant stakeholders including the public
- Provide quality information, educational and outreach programmes to member organisations, including knowledge transfer and exchanging information and best practices with and among members
- Collaborate on projects to the benefit of the SMA community, also on a global level
- Build and maintain a responsible, sustainable and impactful organisation