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Focus Areas and Supporting FSHD UK

Your kindness helps us push treatments forward and provide hope to patients across the UK. Explore the information below to see how you can get involved and learn how your donation directly contributes to progress.

We would like to take this opportunity to thank and recognise all the individuals and organisations that have helped FSHD UK to continue with our mission.

“Funding today fuels the discoveries and therapies of tomorrow. Together we are building the foundations for breakthroughs that once seemed impossible for our FSHD patients and community.”
Raj Badiani, FSHD UK Founder (Font Style: Hero Body)

2026-2027 Focus Areas

For 2026-2027, we will be focused on:

Patient Engagement

  1. Patient Engagement @site
  2. Information on FSHD e.g. Natural History Studies, Clinical Trials
  3. Website and Social Media
Clinical Trial Readiness
  1. Patient Advisory Group
  2. Standardising In-Clinic Assessments and Outcome Measures
  3. GP and Wider FSHD Education for Clinicians
Access Readiness

Working within the Project Mercury objectives to gain access to therapies for the FSHD community

UK FSHD Registry

  1. Support to increase patient registrations
  2. Support the maintenance and upkeep of the UK FSHD registry
  3. Work with the UK FSHD Registry and other organisations such as TreatNMD

FSHD UK Sustainability

Basic insurance, office and technical costs with a view to a future part-time coordinator

Potential Scope for Technical Infrastructure Projects

FSHD UK Network Database to bring together the clinical and research data

How to Support Us

If you wish to kindly make a donation, please follow the JustGiving link below. If your organisation would like to engage in more involved or longer-term support, please contact us via the form in the footer.

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