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The Rare Rebels™ Podcast shares unscripted conversations with patients, caregivers, advocates, and researchers who are changing the future of rare disease. These aren’t polished soundbites — they’re real voices from the front lines, revealing the humanity, heartbreak, and hope woven into the rare disease experience.
Because change doesn’t 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.
| Episode | Date |
|---|---|
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Episode 8: Shelley Bowen | No One Will Care More Than a Parent
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Feb 24, 2026 |
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Episode 7: Léon van Wouwe | Finding the Patients We’re Missing
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Feb 17, 2026 |
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Episode 6: Wes Michael | Building the Infrastructure for Patient Voice
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Jan 28, 2026 |
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Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope
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Jan 27, 2026 |
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Episode 4: Megan Soliman | When Medicine Meets Lived Experience
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Jan 20, 2026 |
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Episode 3: Susannah Fox | Mapping the People Who Move Systems
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Jan 20, 2026 |
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Episode 2: Emil Kakkis | When Science Becomes Human
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Jan 20, 2026 |
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Episode 1: Mark Dant | Connecting the Dots When No Path Exists
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Jan 20, 2026 |
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A Bridge Episode: Images of Joy → Rare Rebels™
|
Jan 20, 2026 |
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Archived - Sharing stories of resilience through pediatric illness
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Jun 02, 2023 |
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Archived - Patrick Moreau - Embracing imperfection for authentic voice overs
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May 04, 2021 |
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Archived - Anja Poehlmann - Capturing life stories through the teen years
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Mar 23, 2021 |
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Archived - Mandee Simas - Lifestyle wall art and healing through photos.mp3
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Mar 10, 2021 |
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Archived - Melissa Ortendahl - Storytelling is a constant in all genres.mp3
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Mar 03, 2021 |
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Archived - Lolly Nazario - Authentic Storytelling with In-Home Newborn Sessions
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Feb 23, 2021 |
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Archived - Carter Paine - My 6 year old’s love note
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Feb 14, 2021 |
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Archived - Candice Shuman - Unconventional views of joy
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Feb 14, 2021 |
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Archived - Anja Poehlmann - Imperfections are part of joy
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Feb 14, 2021 |
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Archived - Mandee Simas - Light capturing the magic of the moment
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Feb 14, 2021 |
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Archived - Melissa Ortendahl - A family of 5 self-portrait
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Feb 14, 2021 |
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Archived - Lolly Nazario - Teaching her daughter photography
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Feb 14, 2021 |
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Archived - Melody Joy - Why I am creating this podcast
|
Feb 14, 2021 |
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Archived - Images of Joy Trailer
|
Jan 31, 2021 |