Events
NCSL Summit 2024 Rare Patient Access Learning Hub
RAAP presented at the 2024 NCSL Summit. We discussed how rare patients face enormous challenges navigating the healthcare system. This session explored the impact of copay accumulators and prescription drug affordability boards in creating barriers to therapies and alternative pathways to improve patient access.
RAAP 2024 PDAB Webinar Series
This is a follow-up to our January workshop, discussing how PDABs impact the rare disease community. We update attendees with our work in states with active PDABs and legislation.
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.
ADDRESSING ACCESS ISSUES FOR RARE DISEASE PATIENTS
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.
