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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.


2019 International Ataxia Research Conference is a Success!


The international scope of ataxia research was well represented by over 430 conference attendees from twenty-one countries!  We are grateful for such meaningful participation from all aspects of the research community including 150 attendees from academia and regulatory, 140 attendees from industry, 100 junior investigators and representatives from seventeen patient advocacy groups.

We were energized by the dynamic exchange of ideas during the oral and poster presentations as well as during the flash talks and the mentoring session. We hope the attendees had the opportunity to foster collaborative relationships and left with a renewed sense of purpose.
Thank You
If you attended the conference - please take a moment to share your feedback by Taking this Survey.

IARC 2019 Sponsors

Freidreich's Ataxia: The CHUM and its partners involved in an international study to better understand the disease and its progression over time

CHUM Staff
Uncoordinated movements, impaired speech caused by muscle weakness, diabetes and cardiomyopathy: Friedreich’s ataxia hits hard and early. This neurodegenerative orphan disease, for which no treatment exists, generally manifests between the ages of 5 and 15, initially affecting walking.

Occurring in 1 in 30,000 people, the disease is rare. To identify the best ways of monitoring its progression, a research network has been created. CHUM neurologist Antoine Duquette and his colleagues at the Centre de réadaptation Lucie-Bruneau are collaborating in an international study directed by Dr. David R. Lynch of the Children’s Hospital of Philadelphia.

Read the entire article HERE

Global Ataxia Advocacy Organizations Unite to Host International Ataxia Research Conference in Washington, DC

On November 14th-16th, the Friedreich’s Ataxia Research Alliance (FARA US), Ataxia UK, fara (Australia), and GoFar (Italy) will host the International Ataxia Research Conference (IARC) in Washington DC.


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Reata Announces Positive Topline Results from the MOXIe Registrational Trial of Omaveloxolone in Patients with Friedreich’s Ataxia

ACHIEVED PRIMARY ENDPOINT OF STATISTICALLY SIGNIFICANT IMPROVEMENT IN MFARS COMPARED TO PLACEBO AFTER 48 WEEKS OF TREATMENT


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12th Annual Friedreich's Ataxia Symposium at CHOP

Join Us!
12th Annual Friedreich's Ataxia Symposium
Monday, Oct. 14, 2019


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