Shanthi Hegde (she/her) is a dedicated advocate working at the intersection of rare diseases and health equity. Living with two bleeding disorders and immune dysregulatory syndrome, she brings an intersectional lens to her work. Shanthi currently serves on the board of the Hemophilia Federation of America (HFA) and has previously served on the board of the National Bleeding Disorders Foundation (NBDF). Her national advocacy efforts span multiple fronts: advancing mental health access for individuals with rare diseases through the Bleeding Disorders Substance Use and Mental Health Coalition, pushing for affordable drug pricing, championing education and research initiatives for women of color with bleeding disorders, and consulting for the ATHN-CDC Community Counts initiative.

Shanthi founded the first young adult bleeding disorders initiative in the U.S., expanding youth representation in legislative advocacy and policy discussions. In Fall 2024, she led the inaugural Young Adult Summit in partnership with Sanofi, creating a platform for education and advocacy surronding rare diseases. Additionally, she consults with both pharmaceutical and nonprofit sectors to strengthen patient advocacy programs and guide equitable drug development. Her research interests include improving access to mental health care and examining the impact of medical traumatic stress on individuals living with rare and chronic diseases. Shanthi is currently pursuing a Master of Public Health at Brown University. She holds a Bachelor of Science with honors in Psychology and Biology, and a minor in History, from Northeastern University.