FARPE

FARPE, the Spanish Federation of Associations for Hereditary Retinal Dystrophies, brings together 10 regional associations working to improve the lives of people affected by retinitis pigmentosa and other inherited retinal conditions. It represents patients and families across Spain, raises awareness, and provides information and guidance about retinal diseases and related support.

Through its activities, FARPE shares educational resources on conditions including Stargardt disease, Leber congenital amaurosis, Usher syndrome, and cone-rod dystrophies. It also promotes accessibility, hosts webinars and seminars, supports young people through FARPE JOVEN, and publishes Revista Visión, covering low vision, blindness, and community news. The federation participates in European networks and initiatives, including ERN-EYE and the European Medicines Agency, helping bring patient perspectives to wider discussions.

FARPE works alongside FUNDALUCE, the Foundation for the Fight Against Blindness, which issues an annual call for research grants focused on potential therapeutic strategies for retinal dystrophies. Together, they connect patients, associations, researchers, and supporters in pursuit of greater awareness and progress.