Be a part of the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy.
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When you join our community you will also have the opportunity to become a part of our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Join Our FSHD Community
Do you have family members with FSHD? Let them know we'd love them to join us, too!
Even if you have been a member of the FSHD Society for many 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 and we'd love to have full and correct information.
If you’ve signed up to join our community, no need to also sign up for email alerts you are already on the list and can amend your preferences at any time.