You can make a difference! When you first found our website, you may have signed up to receive our emails, and you may, understandably, have thought you were all set. But we still have two vital, unanswered questions:
- Are you a person with FSHD?
- Where do you live?
We must have this information because our clinical trial alerts go out only to patients who live near a study location. To make sure you’ll be notified, please fill out the Research Contact Registry form on our website. Your data is safe with us. You will NOT be contacted directly by companies or automatically enrolled in a study.
The need is urgent. There could be four or five FSHD clinical trials in the coming year, yet there may not be enough known, email-contactable patients in our database to meet the enrollment goals for these trials. Any delay in enrolling patients slows down the entire clinical trial – and delays promising therapies from reaching our community.
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. To be safe, just click on the link below and fill out the form.
Do you have family members with FSHD? Let them know how important it is for each individual to join the Research Contact Registry. Thank you!