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Impacted by Friedreich’s Ataxia? Share Your Voice!

How to get involved in the Friedreich’s Ataxia Patient-Focused Drug Development Meeting June 2

An upcoming Friedreich’s ataxia (FA) Patient-Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) is your opportunity to tell the FDA and drug developers about challenges and burdens you have experienced with FA, and share your thoughts about what is most important to you in evaluating potential new treatments for the disease. 

The meeting, co-organized by the Friedreich’s Ataxia Research Alliance, 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.

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.

There are several ways you can get involved:

• Attend the meeting in Bethesda, Md., on June 2, from 8 a.m.–12:30 p.m., at the College Park Marriott and Conference Center.

• If you cannot attend, join online via streaming webcast and share your input on the specific panel and demographic questions. 

• Keep an eye out for future communications and surveys through which you may be able to contribute your thoughts. 

No one can make the voice of the FA community heard more than those impacted by the disease. Your participation is critical to making sure our collective voice makes an impact. This is your chance to make sure your input helps guide the development of successful, effective and meaningful treatments for FA. 

To learn more about the meeting and how you can contribute, visit MDA's Advocacy section.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.