Fundación Atrofia Muscular Espinal (FundAME)

Support for people with spinal muscular atrophy

Fundación Atrofia Muscular Espinal (FundAME) is a nonprofit based in Madrid at Calle Nuria 93, 28034 (tax ID G-99075087). It supports and advocates for people with spinal muscular atrophy (SMA) and their families in Spain and promotes research into the neuromuscular disease.

Services and programs

• Support for patients and families: medical guidance, peer networks, public assistance, an emergency medical card, and support for people newly diagnosed.
• Patient advocacy: access to treatment in Spain, engagement with the public health system, and monitoring clinical trials.
• Research: a national SMA patient registry, independent and collaborative projects such as PROFuture, SMArt Horizon, and SMA Europe, a specialist network, scientific meetings, and an international research congress.
• Education and events: talks on basic and clinical science, family meetings, and events for specialists.
• Ways to help: memberships, donations, business partnerships, a charity shop, and fundraising events.

Contact

Phone for emergencies and newly diagnosed patients: +34 634 23 80 04, also available on WhatsApp. Email: organizacion@fundame.net. Address: Calle Nuria 93, 1st floor, C, 28034 Madrid.

Online

FundAME is on Facebook, X, Instagram, LinkedIn, and YouTube and publishes news about advances in SMA, including approval of new gene therapies and newborn screening.