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

We’re marking Rare Disease Month 2026 by highlighting the powerful story of Shanthi Hegde, a young patient advocate working to transform how bleeding disorders are understood, treated, and supported. This work is fueled by her own arduous journey with two rare bleeding disorders and immune dysregulatory syndrome, and an extended diagnostic odyssey marked by dismissal, underdiagnosis, and structural bias. “I was told many times by many providers that these disorders are not common in Indians and that my bruises were there just because I'm brown.” Admirably, Shanthi pushed past this mistreatment, advocated for her medical needs, and devoted herself to tackling a range of issues confronting rare disease patients from mental health access to affordable drug pricing to research equity.

In this remarkable Year of the Zebra conversation with host Lindsey Smith, you’ll also learn about:

• Shanti’s work with the Hemophilia Federation of America;
• How gaps extend beyond treatment to include insurance coverage, provider training, and substance use care;
• What clinicians can do to improve the work they do with rare disease patients.

Join us for a conversation that connects patient voice to system change, and explores what real equity for rare disease communities will require.

Mentioned in this episode:
Hemophilia Federation of America
Shanthi's LinkedIn Profile

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