Rare Rebels™

By Melody Joy Paine

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Category: Medicine

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Episodes: 23

Description

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
Episode 8: Shelley Bowen | No One Will Care More Than a Parent
Feb 24, 2026
Episode 7: Léon van Wouwe | Finding the Patients We’re Missing
Feb 17, 2026
Episode 6: Wes Michael | Building the Infrastructure for Patient Voice
Jan 28, 2026
Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope
Jan 27, 2026
Episode 4: Megan Soliman | When Medicine Meets Lived Experience
Jan 20, 2026
Episode 3: Susannah Fox | Mapping the People Who Move Systems
Jan 20, 2026
Episode 2: Emil Kakkis | When Science Becomes Human
Jan 20, 2026
Episode 1: Mark Dant | Connecting the Dots When No Path Exists
Jan 20, 2026
A Bridge Episode: Images of Joy → Rare Rebels™
Jan 20, 2026
Archived - Sharing stories of resilience through pediatric illness
Jun 02, 2023
Archived - Patrick Moreau - Embracing imperfection for authentic voice overs
May 04, 2021
Archived - Anja Poehlmann - Capturing life stories through the teen years
Mar 23, 2021
Archived - Mandee Simas - Lifestyle wall art and healing through photos.mp3
Mar 10, 2021
Archived - Melissa Ortendahl - Storytelling is a constant in all genres.mp3
Mar 03, 2021
Archived - Lolly Nazario - Authentic Storytelling with In-Home Newborn Sessions
Feb 23, 2021
Archived - Carter Paine - My 6 year old’s love note
Feb 14, 2021
Archived - Candice Shuman - Unconventional views of joy
Feb 14, 2021
Archived - Anja Poehlmann - Imperfections are part of joy
Feb 14, 2021
Archived - Mandee Simas - Light capturing the magic of the moment
Feb 14, 2021
Archived - Melissa Ortendahl - A family of 5 self-portrait
Feb 14, 2021
Archived - Lolly Nazario - Teaching her daughter photography
Feb 14, 2021
Archived - Melody Joy - Why I am creating this podcast
Feb 14, 2021
Archived - Images of Joy Trailer
Jan 31, 2021