Your data will power breakthroughs for FSHD
When FSH Muscular Dystrophy impacts a family, they have one goal: to live their best life, which includes finding treatments and a cure. There are no approved drugs yet to treat FSHD, but at the FSHD Society, we are working hard to advance research and speed drug development.
There is so much to learn and getting those answers depends on you. When you participate in research, you
- help researchers understand how FSHD progresses;
- help establish the tools needed to see if new drugs are effective;
- increase understanding of the costs of living with FSHD;
- advance knowledge about the diversity in the FSHD community;
- improve care at the doctor’s office.
The FSHD Society will not share the information you provide with any third parties. Your participation is critical to finding treatments and a cure for FSHD!
Even if you have been a member of the Society for years...
...or personally know our staff, the fact that you are a patient may not be recorded in our database. We have also added additional questions that help us target research opportunities to qualified patients. Please complete the form to ensure we have the most up to date information!
Do you have family members with FSHD?
Let them know how important it is for each individual to join the FSHD Society and participate in the research. Call, email, or text them an invitation to join the registry and send them to our Join the Community sign-up page.