Our Network

FSHD UK is more than an organisation — it’s a growing network of individuals, families, clinicians, researchers, and partners all working towards a shared goal: improving the lives of those affected by facioscapulohumeral muscular dystrophy (FSHD).

Across the UK and beyond, our network connects people at every stage of their journey. From those newly diagnosed, to long-standing members of the FSHD community, we provide opportunities to share experiences, access support, and stay informed about the latest developments in research and care.

We collaborate closely with healthcare professionals, leading researchers, and specialist centres to ensure our community benefits from accurate information, emerging treatments, and opportunities to take part in research that could shape the future of FSHD.

Our regional groups, online communities, and partner organisations help create a strong, supportive environment where no one feels alone. Whether it’s attending events, joining discussions, or contributing to research initiatives, every connection strengthens our collective voice.

Together, our network drives awareness, accelerates progress, and brings hope for a future where FSHD no longer limits lives.