In The News

Accelerated Approval Delivers Hope for Rare Disease Patients

The Accelerated Approval Pathway (AAP) has delivered innovative therapies to rare disease patients for three decades. However, the recent and controversial approval by the Food and Drug...Read More

RAAP’s Policy Director, Mac Haddow, testified in Utah’s Senate Business and Labor Committee in support of S-139, which ensures patients will continue to have access to their needed...Read More

RAAP Joins Utah All Copays Count Coalition

Washington, D.C.  (2-10-2022) – The Rare Access Action Project (RAAP), joined with the Utah All Copays Count Coalition in signing a letter asking the Utah Senate Business and Labor Committee...Read More

STOP: Accelerated Approval As A Proxy For High Drug Costs Is Misguided

The Rare Access Action Project, (RAAP) submitted comments to the Oregon Health Authority’s (OHA) proposed renewal and amendment of its Section 1115 waiver for the July 1, 2022 – June 30,...Read More

RAAP Launches TV & Digital Campaign RAAP

Washington, D.C.  (12-7-2021) – The Rare Access Action Project, (RAAP), announced today they will be taking their fight to close patient out of pocket costs and protect innovation on...Read More

Build Back Better Will Crush Rare Disease Innovation

Washington, D.C. (11.29.2021) – This morning, the Rare Access Action Project (RAAP) released a study entitled, Build Back Better Act (BBBA) may not build a future of innovation.[1] The...Read More

25 Million Rare Disease Patients Deserve Better

Washington, D.C. (11-2-2021) – While negotiations continue regarding the components of the “Build Back Better” plan, recently released information regarding prescription drug...Read More

For Rare Innovation, One Size Does Not Fit All

Washington, D.C. (09-29-2021) – The Rare Access Action Project, (RAAP), released an updated study reflecting the impact to companies that develop treatments for Rare Diseases through...Read More

Comments in response to MACPAC’s recent recommendations for the 2021 Congressional report

On behalf of the Rare Access Action Project (RAAP), we appreciate the opportunity to submit the following comments in response to MACPAC’s recent recommendations for the 2021...Read More