FSHD Hungary

Founded in 2025, FSHD Hungary is a charity based in Hungary working on health, medical research, community development.

FSHD Hungary Alapítvány is a public-benefit patient foundation founded in 2025 to support people in Hungary living with facioscapulohumeral muscular dystrophy (FSHD), a rare inherited muscle disease, and their families. It aims to create an active, supportive community where affected people can access reliable, easy-to-understand information about the disease, diagnosis, symptoms and available support, and find connection with others facing similar challenges. The foundation shares current information, reports on research news and events, and organises projects, events and initiatives for those affected. It promotes the patient registry, which collects standardised long-term data to support research, clinical trial planning and care development. It also maintains domestic and international cooperation with medical institutions, research bodies and patient organisations working on FSHD and rare neuromuscular diseases, including the TREAT-NMD network.