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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.

FARA Advocacy Newsletter - June/July 2021

The 10th Annual Rare Disease Week started July 14, and runs through July 22! It is virtual this year, so regardless of where you are, you can do it! It is a great opportunity to learn about pending US legislation impacting rare disease, gain some advocacy training and, if US based, speak directly to your Members of Congress &/or their staff.

There is still time for you to register and tune in for many of the excellent programs offered during Rare Disease Week.

If you are registering now...

Read the Full Advocacy Newsletter

June Monthly Update for Researchers

FARA Grant Program

FARA is grateful to all investigators for submitting applications to the FARA grant program. All investigators interested in FA-related research are invited to submit a Letter of Intent (LOI) through our submission portal ( The deadline for the last 2021 LOI cycle for General Grants and Postdoctoral Fellowships and Awards is July 15. The LOI must explain how the proposed research addresses FARA's grant program priorities. As FARA's funding resources are limited, this is a competitive, peer-review process, and the LOIs that specifically address FARA’s research priorities are more likely to be invited to submit a full application. Please see more information on how to apply for a FARA grant at

Read the Full June Monthly Update for Researchers

FARA's 2020 Annual Donor Impact Report is now available

FARA's 2020 Annual Donor Impact Report is now available online.
To read about key research programs and advances, as well as the fundraising efforts that fuel them, click the image below.


Monthly Update - June 2021

Dear Friends,

It is an exciting time in FA research. To keep the community informed, FARA recently hosted a webinar on the FA Treatment pipeline. The session included a review of the overall approach and strategy of the pipeline along with progress and new results for specific therapeutics approaches. If you missed it, just click HERE to view the recording.

FARA has also launched a gene therapy education series. An informed community is important to readiness for gene therapy clinical trials. The animated introductory video- Gene Therapy for Friedreich's Ataxia can be viewed by clicking HERE. Throughout the summer, education modules will be released for you to engage with in a self-paced setting.

Additionally, FARA just posted the newest installment of the Minutes of Science series- breaking down your FARA funded research in just a few minutes! Episode 5 offers a brief description of the discovery science behind gene therapy in FA. Click HERE to watch.

Stay tuned throughout the summer for more information and additional education modules. Please consider sharing these videos and other resources as they come online.


Read the Full Monthly Update

FARA Minutes of Science

Announcing the latest installment in the Minutes of Science series- breaking down your FARA funded research in just a few minutes. In Episode 5: Gene Therapy, you will learn more about some of the discovery science behind gene therapy in FA.

And to catch the other episodes in the Minutes of Science series - View the full playlist

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