Rare Access Action Project

Thank you to everyone who joined us for 2023 Fall Policy Conference!! A special shout out to our amazing speakers who brought their passion and expertise to the table for patient focused panels about policy, their impact on accessibility to rare disease treatments, and for centering it all in the humanizing realities of living with a rare diseases. Stay tuned for a recording of the full conference!

The recently passed (IRA) was hailed by
supporters as a major milestone for reducing costs across a range of sectors, including
. The Rare Access Action Project (RAAP) was involved in the debate from
the beginning warning that certain provisions could have detrimental effects on innovation,
particularly in the space.
https://rareaccessactionproject.org/wp-content/uploads/2023/07/Inflation-Reduction-Act-to-Harm-Rare-Disease-Innovation-7-11-23.docx.pdf