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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.

Four National Organizations, Hundreds of Families Impacted, Join Together to Speak with FDA about Drug Development in Friedreich’s Ataxia

HYATTSVILLE, Md. June 1, 2017 — The Friedreich’s Ataxia Research Alliance (FARA), National Ataxia Foundation (NAF), Muscular Dystrophy Association (MDA) and Cure FA Foundation will host the first ever Friedreich’s Ataxia (FA) Patient-Focused Drug Development (PFDD) meeting on Friday, June 2, to give patients, families and caregivers the opportunity to speak directly to the U.S. Food and Drug Administration (FDA) about the impact FA has on their daily lives, and their highly unmet need for effective treatments.

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FARA to Ring The Nasdaq Stock Market Closing Bell - Friday, May 19th

Nasdaq FARA

The Friedreich’s Ataxia Research Alliance (FARA), a non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia will visit the Nasdaq MarketSite in Times Square for Friedreich’s Ataxia Awareness Day.

In honor of the occasion, Ron Bartek, President and Co-Founder and Paul Avery, Chairman of the Board, will ring the Closing Bell.

Read more HERE


JOIN AN UPCOMING LIVE WEBINAR on April 4th or April 11th

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.

Rare Disease Week on Capital Hill, February 27 - March 2, 2017

Rare Disease Week
Ron Bartek and Brigid Brennan joined rare disease advocates from 48 states for the annual Rare Disease Week in Washington DC. The theme this year was research - a mission FARA has been supporting for almost 20 years. Here are some highlights:

Monday - Rare Disease Day at the National Institute of Health (NIH)

It was standing room only as doctors and advocates shared updates from their respective fields. Over 700 people were present and, for the first time, many more livestreamed from home. Everyone was in agreement that research is needed in the rare disease community with less than 500 treatments for over 7000 diseases. However, we are not alone in benefitting from goal. Rare disease are often the "window" into common disease treatments as well. Rep Leonard Lance (R-NJ) spoke about his continuing support for the rare disease community. The crowded erupted in applause to learn that Dr Francis Collins, a champion for our community, was asked to stay on as head of the NIH.

That evening Rare Disease Legislative Advocates (RDLA) hosted a cocktail reception and documentary screening of Up for Air. Senator Ed Markey (D-MA) and Representatives Jim McGovern (D-MA) made brief remarks of support. Our own Ron Bartek moderated the panel discussion of the movie where everyone left in awe by Jerry Cahill's inspirational journey with Cystic Fibrosis.

FA Patient Focused Drug Development Meeting - Your opportunity to tell the FDA what is important to you in finding a treatment for Friedreich’s Ataxia

What is a Patient Focused Drug Development Meeting?

In 2015 the Food and Drug Administration (FDA) began a new initiative to expand the way it looks at therapies, specifically seeking input from patients. The agency wanted to hear directly from the community about patients’ needs, rather than assuming that internal FDA scientists understood every disease and patient population. Thus, it launched the Patient-Focused Drug Development (PFDD) Initiative, a series of public meetings led by the FDA and designed to systematically gather input from patients regarding their experience of living with specific diseases, the preferred impact of potential treatments, and the benefit/risk analysis when considering a new targeted medication.. The FDA scheduled the initial 20 meetings, many of which have taken place and are considered very successful. In order to reduce their administrative burden however, the FDA, has now moved to a new model where such meetings are led by patients and patient groups, with the FDA attending and participating. FA has been selected to be one of the disease areas to host such a meeting in 2017.

Continue reading HERE.

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