EVERYLIFE FOUNDATION FOR RARE DISEASES

Accelerating Kids' Access to Care Act (H.R. 4758, S. 2372) and issues pertaining to out-of-state care; Impact of Inflation Reduction Act on rare disease therapies.

Establishment of FDA Rare Disease Innovation Hub and related issues pertaining to rare disease therapy applications; reauthorization of the pediatric priority review voucher (H.R. 3433), Promising Pathways Act (S. 4426)

FY 25 appropriations legislation and provisions pertaining to coordination of rare disease activities within the FDA and HHS and funding for rare disease policies and programs including establishment of interagency rare disease coordinating committee.

FY 25 appropriations legislation and provisions pertaining to coordination of rare disease activities within the FDA and HHS and funding for rare disease policies and programs.

Issues pertaining to FDA review of application for rare disease therapies; Issues pertaining to interagency coordination and management of rare disease activities; Legislation to reauthorize the Pediatric Priority Review Voucher; S. 4426 Promising Pathways Act