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…