Federación ASEM
A Spanish nonprofit federation of organizations supporting people with neuromuscular diseases and their families through advocacy, information, research, and community programs.
About Federación ASEM
A national federation for neuromuscular conditions
Federación Española de Enfermedades Neuromusculares (Federación ASEM) is a nonprofit nongovernmental organization declared to be of public benefit by Spain's Ministry of the Interior. It brings together associations and foundations focused on neuromuscular diseases and works to strengthen member organizations, improve social inclusion, and support the quality of life of people and families affected by these conditions.
At a glance
- Founded in 2003, continuing the work of the Spanish Association Against Neuromuscular Diseases, active since 1983.
- Includes 37 member organizations.
- Represents more than 60,000 people affected across Spain.
- Has more than 10,000 members.
- Headquarters: 20 Carrer Ter, Office 10, 08026 Barcelona, Spain.
- Email: info@asem-esp.org.
Programs and advocacy
Federación ASEM's work includes guidance and support for member organizations; the National Congress on Neuromuscular Diseases; the Horizonte Neuromuscular gathering; National Neuromuscular Disease Day on November 15; institutional outreach; summer camps for young people; specialized publications; its Information and Support Service (SAI); financial assistance for families who must travel for hospital care; European Erasmus+ projects; public awareness; and support for research.
Leadership and staff
The board is led by president Manuel Rego, vice president Alejandra Fuentes, secretary Yolanda Lozano, treasurer Eva Úbeda, and board members Sandra Margallo, Carme Civit, and Raúl Arribas. The staff includes executive director Begoña Martín; Thais Pousada (Health and Care); Mónica Romero and Raquel Costas (Administration); Rosalía Domínguez (Social Services and Member Support); Elisa Ávila (Social Services and Projects); and Luis Lazarich (Communications).
Funding and partnerships
Public funding includes support from Spain's Ministry of Social Rights and Agenda 2030 through the 0.7% corporate-tax allocation. Partners include GAES, Amplifon, CREER Center, Semergen, Quinielista.es, University of Deusto, Fundación Cerebro, UIC, Lilly, GSK, Fundación La Caixa, Fundación ONCE, Pharnext, and Air Liquide. Federación ASEM is part of ECOM and collaborates with other organizations.
Contact
Headquarters: Barcelona, Spain. Email: info@asem-esp.org.
Neuromuscular disease advocacy and family support