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 rescheduled the Voice of the Patient Forum for June 29, 2020, as an online meeting.
Everyone who is currently registered will be automatically re-registering for the June 29 virtual meeting. IF YOU CANNOT ATTEND, PLEASE NOTIFY US BECAUSE CAPACITY IS LIMITED. If you reserved a room for the now-cancelled April 21 meeting, please contact the Marriott hotel directly to cancel your reservation.
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 livestream on June 29.
Registration required for the livestream. Click here.