FSHD UK
// info & Help
More information and get help
As FSHD UK, we encourage everyone affected by the condition to connect with the wider FSHD and neuromuscular community to access support, share experiences, and stay informed about the latest developments in research and care.
Together, these organisations help provide information, hope, practical support, and a stronger voice for everyone affected by FSHD.
- Patient support and community groups
Key Information & Help
// Info and help
UK FSHD Patient Registry
As a patient with FSHD if you have NOT already enrolled on the UK FSHD Registry, please do so by speaking with the registry manager . The number of patients registered on the UK FSHD Registry is an important consideration in the hosting of clinical trials.
If you have already registered, please keep up to date your full data set on the registry. This is critical for understanding FSHD better and helps future research studies.
The UK FSHD Patient Registry is a database of information that people with FSHD voluntarily share by answering questionnaires. The registry is owned and run by Newcastle University with Dr Chiara Marini-Bettolo as PI, holds ethical approval from NHS, and is funded by MDUK.
The registry allows patients to share information that helps us inform them if they may be eligible to participate in a clinical trial, natural history study, or other research opportunity. The data they share can also be used to facilitate medical, academic and scientific research to help the community learn more about FSHD. Data sharing is strictly governed by the registry steering committee, and the registry is fully GDPR compliant. No identifiable information is ever shared outside of the registry. To learn more, please visit the registry website: www.fshd-registry.org.uk and contact the Registry Manager if you have any questions about signing up.
Information and Education Materials
As part of working with or being members of other organisations, we have agreed to collaborate and share trusted information and thereby avoiding duplication. These organisations have excellent, detailed literature and resources on FSHD.
“The FSHD Society is the world’s largest research-focused patient organization for FSHD“
– FSHD Society
“UK’s leading charity for over 60 muscle wasting and weakening conditions“
– MDUK
Vision: A cure for FSHD. Motto : We are here to help
Other Key Support Organisations
MD Support Centre is an independent Midlands-based charity funded primarily through voluntary donations and grants. They are a unique multidisciplinary centre offering specialised physical therapies and support to people in the Midlands and beyond with neuromuscular, muscle wasting conditions to maintain independence and quality of life.
To learn more about MDSC click here.