Episode
A Personal Struggle Fuels National Advocacy for Rare Disease Patients: Shanti Hegde, Board Member of Hemophilia Federation of America
- Podcast
- Raise the Line
- Published
- Feb 26, 2026
- Duration seconds
- 2719
- Processing state
not_requested- Canonical source
- https://www.osmosis.org/podcast
Actions
POST https://stenobird.com/v1/public/podcasts/raise-the-line-29872/episodes/a-personal-struggle-fuels-national-advocacy-for-rare-disease-patients-shanti-hegde-board-member-of-hemophilia-federation-of-america/transcription-requests
Idempotently request low-priority transcript generation for this episode.GET 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
Read the agent-friendly Markdown representation of this episode resource.
Summary
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.