SMA Europe campaigns to improve the quality of life of people who live with SMA and to bring them effective therapies in a timely and sustainable way, as well as to encourage their optimal care.
We do this by:
- Informing on the expectations of people living with SMA and the burden of living with the disease
- Informing on the potential economic and societal benefits of stabilising or improving the health of people living with SMA
- Providing important information to inform the development of drugs which have the most meaningful effects to people living with SMA
- Generating evidence on the access situation to diagnosis, treatment and care in Europe
- Identifying data gaps that influence access and promoting research to fill them.
- Providing information and coaching to member organisations to ensure they have the tools to advocate effectively and efficiently at national level
- Partner with and influence all SMA stakeholders in the relevant areas of healthcare and research at European level whenever impact can be achieved, taking into account the limited competencies in access issues
Our position statements
Our activities and projects
