FundAME, Fundación Atrofia Muscular Espinal de España
FundAME is a non profit patient organisation. Their main goal is to accelerate the pathway towards a treatment or a cure for SMA and to optimise quality of life of patients. In order to meet their goals, FundAME:
- Funds ResearchRuns, the Spanish SMA Registry, which interacts with the International Treat NMD Registry.
- Runs the Spanish SMA platform for doctors and health practitioners and organises an annual SMA scientific meeting in Spain.
- Supports , informs and orients families with an SMA diagnosis.
- Collaborates and/or interacts with stakeholders (MDs, HTAs, reimbursement authorities, industry, networks, platforms).
- Organises the annual SMA family gathering event.
- Advocates for the rights of people living with SMA in Spain. Carries out joint work with other European organisations through SMA Europe.