FSHD UK
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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.
Information
Help provide information, help and support to such people and their families and carers.
Donations
Make financial donations to support organisations and individuals carrying out research into FSHD, the useful results of which will be published for public benefit.
Awareness
Continue to raise awareness of FSHD within the general public, medical and scientific communities.
Support
Continue to support medical and scientific organisations and individuals with activities and projects to further the Charity’s overall objective of helping to relieve the burden on, and improve quality of life for, people living with FSHD.
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Background/History
The UK has an excellent reputation for high quality FSHD clinical services, research teams and the established UK FSHD Patient Registry. These accomplished UK centres were mainly working in their own areas without an overarching strategy or central driving force. There was no single group focused strategically on FSHD. The UK had missed important opportunities for clinical trials in 2020. There was a gap in making things happen for FSHD in the UK. FSHD UK launched in July 2021.
From mid-2023 FSHD Clinical Trials have started in the UK.
This stakeholder model and our ways of working with our five teams overarched by a Core Team has been a bedrock to our success and has enabled us to drive multiple initiatives.
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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.
