This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether to approve a new therapy. We encourage everyone—patients and family members, at every stage of disease progression—to get involved.
The live webcast is over, but we will be posting the video recording shortly. You may still submit your testimony by email through July 31, 2020. In your comment, please address one or more of the following topics:
- Symptoms of FSHD that have the greatest impact on your quality of life;
- Important activities that you cannot perform because of your FSHD;
- Your greatest concerns about the impact of future progression of your FSHD;
- Treatments you are currently using to try to manage your FSHD;
- What would a treatment need to do for you to consider it to have a meaningful impact.