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FARAFARA Cure FA

Get Involved: Friedreich’s Ataxia Patient Focused Drug Development (PFDD) Meeting

news02202017
Get Involved: Friedreich’s Ataxia Patient Focused Drug Development (PFDD) Meeting.
Tell the FDA what is important to you in finding a treatment for Friedreich’s Ataxia

 
To learn more about the PFDD meeting and how you can contribute, click HERE.
 
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 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 PDFF 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 in-person, join online via streaming webcast and share your input on the specific panel questions, as well as 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. Don’t miss out on the opportunity to make sure your input helps guide the development of successful, effective, meaningful treatments for FA.

About the Author

Felicia DeRosa

Felicia DeRosa

Fundraising & Communications Program Director

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