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.

Institute for Gene Therapies Letter requesting the Senate to include the Accelerating Kids’ Access to Care Act in the FY26 Appropriations bill, Jun, 2025

Partnership to Improve Patient Care Letter opposing Quality-Adjusted Life Year, or QALY, in determining value of treatments, Jun, 2025

272 organizations send letter to HHS Commissioner to reinstate the Advisory Committee on Heritable Disorders in Newborns and Children, May, 2025 

American Brain Coalition letter to Congress to restore funding for the BRAIN Initiative, April, 2025

Coalition for Health Funding Letter to Appropriators on Proposed HHS FY 2026 Cuts, April 2025 

Letter to Blue Cross Blue Shield regarding their decision to hold coverage for 18 months for drugs approved under the Accelerated Approval pathway, April 2025

–  Association of American Medical Colleges letter regarding FY26 appropriations for NIH, April 2025

Leukemia & Lymphoma Society letter in support of the Accelerating Kids’ Access to Care Act (H.R. 1509/S. 752), March, 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

Research!America letter support of robust NIH funding and the protection of research infrastructure, February 2025

Alliance for Connected Care letter urging Congress to establish permanent or long-term access to telehealth, 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

 

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

FARA Ireland