FSHD UK
// ABOUT US
Supporting People Living with Facioscapulohumeral Muscular Dystrophy
FSHD UK is a national charity dedicated to supporting individuals and families affected by Facioscapulohumeral Muscular Dystrophy (FSHD). Our mission is to improve the lives of those living with FSHD through awareness, education, support, advocacy, and investment in research that brings hope for better treatments and, ultimately, a cure.
Every person diagnosed with FSHD faces unique challenges. From navigating symptoms and accessing specialist care, to understanding the condition and planning for the future, living with FSHD can affect every aspect of daily life. FSHD UK exists to ensure that nobody has to face those challenges alone.
// ABOUT US
Our Mission
At FSHD UK, our mission is simple:
To improve quality of life, increase awareness, and support research into treatments and a cure for FSHD.
We work tirelessly to:
- Support individuals and families affected by FSHD
- Raise public awareness and understanding of the condition
- Advocate for better access to healthcare and support services
- Connect the FSHD community across the UK
- Support and promote scientific and medical research
- Provide trusted information and educational resources
// ABOUT US
Supporting the FSHD Community
Living with a rare condition can often feel isolating. FSHD UK helps bring people together through a supportive and understanding community.
We provide:
Information & Guidance
Clear, reliable information about FSHD, diagnosis, symptom management, research developments, and available support.
Community Support
Opportunities for individuals and families to connect through online groups, events, awareness campaigns, and shared experiences.
Advocacy
A stronger voice for the FSHD community when engaging with healthcare providers, researchers, policymakers, and the wider public.
Awareness Campaigns
Initiatives that help improve understanding of FSHD and encourage earlier diagnosis, better support, and increased funding for research.