UPDATE: Our community’s health and well-being are our highest priority, and so due to the risks posed by COVID-19, particularly to people with FSHD, we have decided to postpone the April 21 Voice of the Patient Forum. The meeting remains vitally important to us. We will reschedule when the risk of public transmission of the virus is greatly reduced and all FDA stakeholders are able to attend. We’ll be following up as soon as we have further information.
Everyone who is currently registered will receive priority in re-registering once we have set a new date. In the meantime, please contact the Marriott hotel directly to cancel your room reservation. It’s our understanding that the major airlines are allowing flights to be cancelled and rebooked without incurring the usual cancellation and change fees.
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 April 21st from 10:00 a.m. to 3:30 p.m. Eastern time. A limited number of spaces are available for in-person attendees.
Be Part of the Answer
Mark your calendar and register NOW for the live webcast
Our forum will be webcast live on April 21 from 10:00 a.m. to 3:30 p.m. Eastern time. You will be able to interact and vote in online polls.
Come to the in-person event on April 21, 10:00 AM to 3:30 PM
Let's fill the room! Join us on April 21 at the College Park Marriott Hotel in Hyattsville Maryland. Registration deadline April 6. Note: SPACE IS LIMITED
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.