It was an exciting time in Washington, D.C. on November 14th and 15th. Bonnell Foundation CEO, Laura Bonnell traveled to our nation’s Capital to speak at the Rare Action Access Project (RAAP).
Laura talked about the importance of passing the Rare Disease Advisory Council (RDAC). She also talked about the concern over the passage of the Prescription Drug Advisory Board (PDAB). Laura was one of 4 panel members talking about state legislation. She was joined by moderator Patrick Plues, Jason Harris, Anna Hyde and Melanie Lendal.
Other panels addressed:
* The EPIC Act (solutions to rare patient participation and access to medicaid).
* Modernizing the approach to newborn screening and genetic testing
* Overview of state health issues for 2023 and outlook for 2024
* Implications of the Inflation Reduction Act (IRA) on rare disease drug development and innovation
