FA Patient Focused Drug Development Meeting

FA Patient Focused Drug Development Meeting

By Friedreich's Ataxia Research Alliance (FARA)

Date and time

Friday, June 2, 2017 · 8am - 12:30pm EDT

Location

College Park Marriott Hotel & Conference Center

3501 University Blvd E Hyattsville, MD 20783

Description

The 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.

For more information, visit: http://www.curefa.org/conference

Organized by

The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia. 

FARA's Mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.

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