Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
On June 29, 2020, the FSHD Society hosted the Voice of the Patient Forum. For those familiar with FDA meetings, this was our EL-PFDD, a Patient-Focused Drug Development meeting. The goal was to educate the FDA and other key groups about how FSHD impacts you and your loved ones. In the months leading up to the event, we worked hard to encourage everyone to take part. This included patients and families, no matter where they were in the disease process. Over 400 people joined the live webcast, and their stories are shared in our Voice of the Patient Report.
The report highlights the serious effects of FSHD and the unmet medical needs. It tells these stories in the patients’ own words. The report includes written statements and full transcripts, summarized in the main sections and available in the appendices. It was submitted to the FDA’s Division of Neurology Products, Office of New Drugs, to support the review of future FSHD treatments. The FDA values patients’ feedback when deciding whether to approve new therapies.
We are deeply grateful to all the patients and family members who shared their experiences.
