UPDATE: Due to the risks posed by COVID-19, particularly to people with FSHD, we have rescheduled the Voice of the Patient Forum for June 29, 2020, as a virtual meeting. Everyone who is currently registered will be automatically re-registered for the virtual meeting. If you reserved a room for the now-cancelled April 21 meeting, please contact the Marriott hotel directly to cancel your reservation. It’s our understanding that the major airlines are allowing flights to be cancelled and re-booked without incurring the usual penalties.
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.
You can attend via the free, live webcast on the date of the meeting.
Be Part of the Answer
Mark your calendar and register for the live webcast
Our forum will be webcast live on June 29 from 10:00 a.m. to 3:30 p.m. Eastern time. You will be able to interact and vote in online polls.
Registration deadline is June 22nd.
Make sure we have your current email address
All communication about this event will happen online. Watch your inbox and check your spam folder. Provide us with your email here.