Engaged with Congressional Rare Disease Champions and Stakeholders including:
Direct Hill advocacy and with Staff for key offices, including Rep. Matsui (D-CA) and Rep. Bilirakis (R-FL), Chairs of the Rare Disease Caucus, Rep. Judy Chu (D-CA), Chair of the Congressional Asian Pacific American Caucus, and Sen. Cory Booker (D-NJ)
Presented awards to Sen. Booker and Sen. Scott for their leadership on health priorities
Authored and popularized advocacy letters on: Accessible Air Travel, and Rare Pediatric Disease PRV
Advised on draft legislation, including the Externally-Led Scientific-Focused Drug Development (EL-SFDD) meeting at FDA
Engaged with the Biden Administrative and Agencies (e.g., White House, CMS, FDA, HHS)
Met with the White House on leveraging RDDC to advance Women’s Health Research and Innovation
Submitted comments, on the record, on important regulations, including: FDA Diversity Action Plan Guidance, and DOT Accessible Air Travel
Supported and Collaborated with Rare Disease Advocates
Signed on to letters, including on rare kidney disease in the AAPI
Presented at coalition meetings on policy development around key legislation
Collaborating with Rep. Marilyn Strickland’s Office on Comprehensive Rare Disease Research legislation for introduction in the 119th Congress