We encourage all people living with genetically confirmed FSHD to request a copy of your genetic report from your consultant, or the hospital that referred you for the test. This important document should show whether you have 'type 1' or 'type 2' FSHD and will include information about your specific genetic mutation which will be required to participate in clinical trials. We also have the option for you to upload this to your registry record so this information can be included in research into the condition.
- More information on NHS genetic testing
- More information on the genetics of FSHD
- Example genetic report
- Upload your genetic report to the registry
If you have any questions about the details of your genetic report you should contact your consultant. For any questions about the patient registry, please contact the curator.