JOIN AN UPCOMING LIVE WEBINAR on April 4th or April 11th TO LEARN ABOUT HOW THE FA COMMUNITY CAN PARTICIPATE IN THE PATIENT FOCUSED DRUG DEVELOPMENT MEETING WITH THE FOOD AND DRUG ADMINISTRATION
The Friedreich’s Ataxia Research Alliance (FARA), in partnership with the Muscular Dystrophy Association and the National Ataxia Foundation, will be hosting two live webinars in April to discuss how FA patients and caregivers can participate in the very important, upcoming Patient Focused Drug Development meeting with the U.S. Food and Drug Administration (FDA) in June.
Please join us for one of the two live webinars (click "Read More" below) to view key information, including background information about the FDA & drug development, an overview of FDA Patient-Focused Drug Development, discussion questions & format, tips for participating in the meeting, and meeting logistics.
Both webinars will cover the same material. To dial in, click on the appropriate link above and follow the instructions (hit the “More information” button for the meeting # & audio #). Plan to dial in five minutes early if you have never used WebEx (meeting software), as you may need to download software before joining. Participation in each webinar is limited to the first 100 people who join. The webinars will be recorded and can be viewed later for those who cannot participate live.
Our goal is to have as many patients and caregivers as possible participate in the Patient Focused Drug Development meeting (either in person or via live webcast). This meeting is your opportunity to tell FDA and drug developers about the challenges and burdens you have experienced with FA, and to share your thoughts about what is most important to you in evaluating potential new treatments for the disease. This meeting marks the first-time patients and their families affected by FA, and other caregivers, will be able to speak directly to the FDA and share their experiences in their own words.
Should I participate in a webinar if I cannot attend the FDA meeting in person?
YES! Please join us for one of the upcoming webinars to learn about the FDA meeting because even if you cannot attend in-person, we would like you to participate online via a live webcast. You will be able to actively contribute to the meeting and share your input on the specific panel questions, as well as demographic questions with the use of your mobile device (via texting) or via a web page.
FDA Meeting Date & Location
Meeting location: College Park Marriott and Conference Center, Hyattsville, MD Date & Time: June 2, 2017, 8:00am - 12:30pm
* Following the FDA meeting, there will be a research update for anyone who is interested (1:30-3:00 pm)
