On April 21, the FSHD Society is convening its landmark Voice of the Patient Forum, our community’s opportunity to testify to the FDA on the impact FSHD. An important question to answer is, which symptoms have the biggest impact on your life?
Your testimony will result in a Voice of the Patient Report that will be submitted to the FDA 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.
One of the most important things we must communicate to the FDA is the “disease burden”—all of the ways in which FSHD affects your health, family life, work, social life, and general well-being. In this week’s survey, please share the ways in which FSHD has impacted your life.
Thank you to all who responded to our previous survey on demographics. Here’s what we learned about our community. Of those who responded:
- 90 percent have FSHD themselves
- 75 percent reside in the U.S.
- The older you are, the more likely you are respond to the survey (see graph at right)
- 46 percent are male and 53 are female
- 92 percent identify as white
- Household income is pretty evenly distributed;
- 50 percent are employed or students; 16 percent are on disability, 25 percent are retired
- Nearly 70 percent were diagnosed more than 10 years ago
- 38 percent were never genetically tested or unsure if they have been tested.
If you missed the previous survey, you can still take it!
Click on the button below to visit our Voice of the Patient Forum page where you can:
- Take all five of our pre-meeting surveys now.
- Listen to our January 20 webinar and Q&A about the meeting
- Register for the live webcast on April 21
- Register to attend the meeting on April 21 in Hyattsville, Maryland (space is limited).