In this deeply moving and energizing episode, Dr. Huntley interviews Shanthi Hegde, a rare disease advocate, board leader, and soon-to-be public health student at Brown University. Shanthi shares her powerful journey as a young woman of color living with multiple rare bleeding disorders and an immune dysregulatory syndrome, and she details the systemic barriers patients like her face at every level of the healthcare system.
Shanthi’s work spans national and grassroots levels, serving on the Board of the Hemophilia Federation of America, founding innovative young adult advocacy groups, and leading education, policy, and mental health initiatives for the rare disease and bleeding disorder community. Drawing from her lived experience and academic lens, she delivers invaluable lessons on how patient stories shape policy, why rare diseases matter for public health, and how even a single voice can spark sweeping change.
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