This April 21, the FSHD Society is holding its landmark Voice of the Patient Forum on drug development for FSH muscular dystrophy. You will be hearing a lot about it over the coming months. This event is our community’s opportunity to testify to the FDA on the impact FSHD has on your life and the lives of your loved ones. Your testimony 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.
Get Involved
We encourage everyone—patients and family members, at every stage of disease progression—to get involved. In the first of our series of surveys to help us prepare, please tell us a little about yourself. We want to make sure our meeting represents the full diversity of the FSHD community.
Visit our Voice of the Patient Forum page where you can:
- 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).
- Take all five of our pre-meeting surveys.
What role does Optum play as a partner/sponsor? I work for Optum and it’s exciting to see that they are connected to a disease that controls my life, especially in a role that is connected to a much needed treatment.
Optum is a sponsor. The company has an interest in healthcare outcomes and treatments for underserved communities. They have helped us with our educational outreach. Great partner!