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.

For more information, please contact María Dumont (Director) mdumont@fundame.net or Mencía de Lemus (President) menciadelemus@hotmail.com.