Powering research to treat Friedreich’s Ataxia
Dear FA family,
Although the circumstances of our meeting are difficult, we are glad that you have found the Friedreich's Ataxia Research Alliance.
Leading to the discovery and advancement of treatments for FA
Join a passionate community and change the course of this rare disease
Apply for a research grant and make an impact
Work with an experienced research community
Utilize FARA resources to help optimize the pace of research
Latest news from our community.
Larimar Therapeutics Announces Positive Data from Ongoing Long-term Open Label Study and Updates to Nomlabofusp Program for Friedreich’s Ataxia
Industry NewsWebinar Recording: Solid Biosciences September 2025 Update
FARA News, Industry NewsSiblings Jake and Claire Juip face Friedreich's ataxia together
CommunityLexeo Therapeutics Reports Second Quarter 2025 Financial Results and Operational Highlights
Industry NewsWebinar Recording: Larimar June 2025 Update
FARA News, Industry NewsPress Release & Community Statement: PTC Therapeutics Receives Complete Response Letter for Vatiquinone NDA
Industry News
August 2025 - Advocacy Newsletter
Advocacy
Take Action to Raise Awareness for FA—Submit a Proclamation Request!
AdvocacyJob Posting: Research Portfolio Manager
FARA News
FA Community Conversations FA Drug Development Pipeline Webinar: Recording Available on YouTube
EducationDesign Therapeutics Highlights Progress Across Lead GeneTAC® Programs and Reports Second Quarter 2025 Financial Results
Industry NewsMeet the 2025 FARA Fellows
FARA News, Research
Our upcoming events.
Epic Game Day
The most epic of game days - to benefit FARA. The event will feature food, free-play games, and tournaments.
Grassroots
World Renowned Magician Chris Dugdale Benefit Performance
Magic show to benefit FARA with Chris Dugdale, world renown magician/mentalist, featured on Penn and Teller, Las Vegas shows, and many worldwide television shows.
Grassroots
rideATAXIA Philly 2025
Join us at Montgomery County Community College for an amazing day with our FAmily. Choose between a 4-, 8-, 26-, or 46-mile ride, or a 1.5-mile walk/ride on campus – there's something for everyone!
rideATAXIA
FARA & CHOP FA Symposium
This is a free day-long event filled with presentations for people living with FA and their families, with the option to participate in-person or virtually. The Symposium agenda includes information on clinical management, current research in FA, and other valuable insights for participants.
Education
Mattoberfest
Enjoy an Octoberfest event for FARA in Matt DiIorio's memory.
Grassroots
Team FARA: TCS New York City Marathon
FARA is an Official Charity Partner for the 2025 TCS New York City Marathon. Six members of Team FARA will run the marathon to redefine what is possible when we work together towards a common goal- treatments and a cure for Friedreich's ataxia (FA).
Grassroots
rideATAXIA Dallas 2025
Get ready for an amazing day at Lewisville Railroad Park! Whether you're up for a 15, 10, or 4.5-mile ride, or a 1.5-mile walk/ride, there's something for everyone.
rideATAXIA
Rare Disease Day
Rare Disease Day is a global movement to raise awareness of rare diseases and work towards equity in health care, particularly access to diagnosis and approved treatments for people living with a rare disease. Since its inception, thousands of Rare Disease Day events have taken place across the world, reaching millions of people and fostering a growing public understanding of rare diseases and the high unmet medical need of this community.
Advocacy