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PHEC 419: Why Patient Voices Matter in Public Health Policy, With Shanthi Hegde

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Manage episode 502500476 series 1537981
Content provided by DrCHHuntley and Dr. CH Huntley. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by DrCHHuntley and Dr. CH Huntley or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

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.

📲 Join the PHEC Podcast Community App

▶️ Visit the PHEC Podcast Show Notes

▶️ DrCHHuntley, Public Health & Epidemiology Consulting

  continue reading

440 episodes

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iconShare
 
Manage episode 502500476 series 1537981
Content provided by DrCHHuntley and Dr. CH Huntley. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by DrCHHuntley and Dr. CH Huntley or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

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.

📲 Join the PHEC Podcast Community App

▶️ Visit the PHEC Podcast Show Notes

▶️ DrCHHuntley, Public Health & Epidemiology Consulting

  continue reading

440 episodes

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