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Streamed live on Jun 2, 2017
** Advance To 11mins 30 Sec For Start Of Video **
About the Meeting
The Friedreich’s ataxia (FA) Patient Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) is an opportunity for the FA patients and caregivers to tell the FDA and drug developers about challenges and burdens of living with FA, and share their thoughts about what is most important in evaluating potential new treatments for the disease.
The meeting, co-organized by the Friedreich’s Ataxia Research Alliance, CureFA Foundation, Muscular Dystrophy Association and National Ataxia Foundation, marks the first time patients and families affected by FA will be able to speak directly to the FDA and share their experiences in their own words.
There will be an opportunity to participate in person and online via live stream video and remote polling. Information captured at the meeting, summarizing input about the patient experience from people with FA across the country, will be published in a “Voice of the Patient” report and submitted to the FDA for inclusion in the framework used to evaluate future FA therapies.