COLLABORATION IS KEY
Advocacy Partnerships
FARA has a long history of working with other advocacy groups. It is through these collaborations that we are able to build strength in numbers and grow awareness of issues that impact all of us.
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Coalition Letters FARA Joined
Listed to the right are coalition letter FARA has signed onto from our advocacy partners. Each one addressed an issue that impacted the FA community or its mission to accelerate FA treatments.
– Association of American Medical Colleges letter regarding FY26 appropriations for NIH, April 2025
– NORD letter to NY legislators urging a RDAC, February, 2025
– American Society of Gene and Cell Therapy letter supporting robust NIH appropriations, February 2025
– MDA letter urging the NIH to retract the 15% cap on indirect costs within grants, February 2025
– EveryLife letter to Trump Administration highlighting rare disease policy priorities, January 2025
– EveryLife letter to Virginia General Assembly in support of RUSP alignment, January 2025
– The Leukemia & Lymphoma Society supporting the Accelerating Kids’ Access to Care Act, December 2024
– NORD & EveryLife letter urging Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher program before CR expires, November 2024
– NORD letter to Congress in support of the Creating Hope Reauthorization Act, September 2024
– FY25 NDD United letter to Congress to robustly fund NDD programs, June, 2024
– American Brain Coalition’s letter in support of the BRAIN Initiative funding, June, 2024
– Advanced Research Projects Agency for Health (ARPA-H) Community Letter, May 2024
– NORD & EveryLife letter urging Congress to make technical changes to IRA, Dec, 2023
– Coalition letter in support of Dr Monica Bertagnolli as director of the NIH, Oct, 2023
– Alliance for Connected Care letter in support of the Telehealth Expansion Act (S. 1001), Oct, 2023
– Alliance for Connected Care letter in support of the Telehealth Expansion Act (H.R. 1843), Oct, 2023
– NORD letter in support of S. 1214, the RARE Act, May, 2023
– NORD letter to CMS on their Medicare Drug Price Negotiation Program guidance, April, 2023.
Advocacy Partner Organizations
Alliance for a Stronger FDA
Alliance for Regenerative Medicine
Eurodis
EveryLife Foundation
Faster Cures, A Center of the Milken Institute
Genetic Alliance
Global Genes
Michael J. Fox Foundation
Muscular Dystrophy Association (MDA)
National Ataxia Foundation (NAF)
National Health Council
National Organization for Rare Disorders
Reagen-Udall Foundation
Research!America
Global FA Patient Organizations
Ataxia UK
Friedreich's Ataxia Research Association
FEDAES
GoFAR
FARA Ireland
AFAF
