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.
– 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, Sep, 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
