RAAP Events

RAAP 2023 Fall Policy Conference


Rare Access Action Project’s 2023 Fall Policy Conference covers the implications of the IRA on Rare Disease Drug Development and Innovation, modernizing the approach to Newborn Screening and Genetic Testing, and an overview of State Health Issues for 2023 plus the outlook for 2024 including RDACs and PDABs. This event brings together legislative stakeholders, industry experts, state and federal panels, and patients to discuss access challenges and solutions.


Download the 4th Annual Fall Policy Conference Guide.



The Rare Access Action Project (RAPP), sponsored and ran a panel during the Learning Hub portion of the National Conference of State Legislatures (NCSL) Legislative Summit held in Indianapolis, IN.
Click HERE to learn more.

RAAP Spring Workshop

Panels from RAAP’s 2021 Annual Meeting

What Keeps RAAP Up at Night?

Rare Access at the Federal Level (and Rare Access Leadership Award to Rep. Scott Peters – CA-52)­

Federal RAAP Up and Action Discussion­

RAAP Rare Access Leadership Awards (Ohio State Senator Stephanie Kunze and Khrystal Davis – Texas Rare Alliance)­

Cross State Medicaid Challenges for Medically Fragile Children (Presented by Orchard Therapeutics)

State Dynamics – Solving Access Issues at the State Level (Presented by Biogen)­

State RAAP Up­