Our webinar will prepare you for the Voice of the Patient Forum on April 21. The Forum is the FSHD Community’s platform 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. Anyone can participate on-line via our live webcast and lend your voices to those of patients and families who will be testifying in-person in Maryland.
This webinar will explain the day's agenda, what in-person attendees can expert, how to log-in to the webcast, how to use the live polling app that will collect participants' responses to our survey in real time, how to provide your testimony during the forum, and answer other questions you may have.