# A Personal Struggle Fuels National Advocacy for Rare Disease Patients: Shanti Hegde, Board Member of Hemophilia Federation of America

Page: https://stenobird.com/podcast/raise-the-line-29872/a-personal-struggle-fuels-national-advocacy-for-rare-disease-patients-shanti-hegde-board-member-of-hemophilia-federation-of-america
Text version: https://stenobird.com/podcast/raise-the-line-29872/a-personal-struggle-fuels-national-advocacy-for-rare-disease-patients-shanti-hegde-board-member-of-hemophilia-federation-of-america.md
Podcast: [Raise the Line](https://stenobird.com/podcast/raise-the-line-29872)
Published: 2026-02-26T17:00:00+00:00
Episode link: https://www.osmosis.org/podcast
Audio file: https://cdn.simplecast.com/media/audio/transcoded/4dabe4aa-b059-4b71-b1b0-bc0467d6937b/76aac233-4587-4ece-89ba-76c24522a3de/episodes/audio/group/38cedbb3-1f02-451a-b387-947228cafdb9/group-item/6f8c6adc-a52e-4dcf-8ba0-0bacef7a6823/128_default_tc.mp3?aid=rss_feed&feed=9vxwebuv
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Duration seconds: 2719

## Resource

We’re marking Rare Disease Month 2026 by highlighting the powerful story of Shanthi Hegde, a young patient advocate whose efforts to transform how bleeding disorders are understood, treated, and supported is fueled by her personal struggle with these conditions. Join host Lindsey Smith for a remarkable Year of the Zebra conversation that connects patient voice to system change, and explores what real equity for rare disease communities will require.

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## Transcript

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