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Rare RebelsAuthor: Melody Joy Paine
The Rare Rebels Podcast shares unscripted conversations with patients, caregivers, advocates, and researchers who are changing the future of rare disease. These arent polished soundbites theyre real voices from the front lines, revealing the humanity, heartbreak, and hope woven into the rare disease experience.Because change doesnt happen through statistics alone it happens through connection.Hosted by award-winning storyteller and advocate Melody Joy Paine, Rare Rebels brings lived experiences to the forefront, bridging gaps between families, researchers, nonprofits, and industry stakeholders. Through these deeply personal stories, we build understanding, inspire action, and drive meaningful change.Formerly known as the Images of Joy Podcast, Rare Rebels is a relaunch and expansion that retains archived episodes while introducing a new lens: one focused on amplifying the rebels in rare disease who refuse to wait for systems to change and are doing something about it. Language: en-us Genres: Documentary, Health & Fitness, Medicine, Society & Culture Contact email: Get it Feed URL: Get it iTunes ID: Get it Trailer: |
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Episode 9: Jeevan Mann | Research Through Lived Experience
Episode 9
Sunday, 9 August, 2026
Jeevan Mann isn't just researching Ehlers-Danlos syndrome. He lives with it every day. In this conversation, we explore why lived experience belongs in research, why diagnosis matters even when treatments are limited, and how patient perspectives can strengthen the science itself.
