Rare Rebels™
Melody Joy Paine
Publishing Details
About This Podcast
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.
Explore Statistics
Recent Episodes
S1E8 Shelley Bowen | No One Will Care More Than a Parent
When this conversation with Shelley Bowen was recorded, there was no resolution yet. Families were still waiting — still pushing — still living inside the uncertainty of whether a treatment would…
S1E7 Episode 7: Léon van Wouwe | Finding the Patients We’re Missing
Léon van Wouwe brings a systems-level perspective to rare disease through his work applying machine learning to healthcare data. His focus is on identifying patients who are already interacting with…
S1E6 Episode 6: Wes Michael | Building the Infrastructure for Patient Voice
Episode 6: Wes Michael | Building the Infrastructure for Patient Voice Wes Michael brings a systems-level perspective to the rare disease ecosystem through his work as the founder of Rare Patient…
S1E5 Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope
Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope Jennifer Siedman brings a steady, thoughtful presence to conversations that many families struggle to name. As a parent and leader…
S1E4 Episode 4: Megan Soliman | When Medicine Meets Lived Experience
Episode 4: Megan Soliman | When Medicine Meets Lived Experience Megan Soliman brings a rare dual perspective to this conversation as both a physician and a parent navigating rare disease. Her…
S1E3 Episode 3: Susannah Fox | Mapping the People Who Move Systems
Episode 3: Susannah Fox | Mapping the People Who Move Systems Susannah Fox brings a unique ability to listen deeply and reflect patterns back to the people living them. In this conversation, she…
S1E2 Episode 2: Emil Kakkis | When Science Becomes Human
Episode 2: Emil Kakkis | When Science Becomes Human Emil Kakkis began his career wanting to focus on the science. He imagined a life in the lab, driven by research questions and discovery. What he…
S1E1 Episode 1: Mark Dant | Connecting the Dots When No Path Exists
Episode 1: Mark Dant | Connecting the Dots When No Path Exists Mark Dant’s story sits at the foundation of modern rare disease advocacy. Long before online communities, searchable research, or…
A Bridge Episode: Images of Joy → Rare Rebels™
If you’ve been subscribed to this feed for a while and you’re wondering how you got here, you didn’t miss anything — the work just evolved. This feed began as Images of Joy and has grown into Rare…
S2 Archived - Sharing stories of resilience through pediatric illness
The Imperfect JOY® podcast is taking on a new focus. We will explore resilience through many different challenges that families face when they have a child diagnosed with critical illness. We’re not…
S1E1 Archived - Patrick Moreau - Embracing imperfection for authentic voice overs
https://www.musestorytelling.com/
S1E1 Archived - Anja Poehlmann - Capturing life stories through the teen years
As kids get older and naturally become more distant from their parents as the explore their indepedence and the way they fit into the larger world outside of the home, it often becomes challenging to…
S1E1 Archived - Mandee Simas - Lifestyle wall art and healing through photos.mp3
Join our Affinity group or apply for a mentorship: https://imageofjoy.com — Mandee Simas Bewilder Photography https://www.instagram.com/bewilderphotos — 03:28 Who is Mandee 05:30 Adjusting her…
S1E1 Archived - Melissa Ortendahl - Storytelling is a constant in all genres.mp3
Melissa Ortendahl https://www.melissaortendahlphotography.com/ https://www.instagram.com/melissaortendahlphotography/ ---- View Melissa's Images of Joy: https://imagesofjoy.com/episode-3/ Follow us:…
S1E1 Archived - Lolly Nazario - Authentic Storytelling with In-Home Newborn Sessions
Lolly Nazario https://www.lollyslens.com/ https://www.instagram.com/lollyslensphotography/ ---- Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com ---- 01:00 How Lolly got…
S1E1 Archived - Carter Paine - My 6 year old’s love note
Watch Carter's video love note on the companion blog post: https://imagesofjoy.com/episode-8/
S1E1 Archived - Candice Shuman - Unconventional views of joy
View Candice's image of joy on the companion blog: https://imagesofjoy.com/episode-7/ . -----Guest info------ Candice Shuman Candice Shuman Films & Photos Ontario,…
S1E1 Archived - Anja Poehlmann - Imperfections are part of joy
Companion Blog: https://imagesofjoy.com/episode-5/ . ------Guest Info------ Anja Poehlmann Brighton & Hove, UK https://www.anjapoehlmann.com/ https://www.instagram.com/by_anjap/
S1E1 Archived - Mandee Simas - Light capturing the magic of the moment
See Mandee's image of joy on the companion blog post: https://imagesofjoy.com/episode-4/ . -----Guest info----- Mandee Simas Bewilder Photography Muskoka,…
S1E1 Archived - Melissa Ortendahl - A family of 5 self-portrait
See Melissa's image of joy on the companion blog post: https://imagesofjoy.com/episode-3/ . ------Guest Info------ Melissa Ortendahl Photography Central,…
Frequently Asked Questions
Rare Rebels™ has published 23 episodes since January 2021, covering topics in Documentary, Health & Fitness.
Rare Rebels™ is currently declining with new episodes weekly. Average episode length is 33m.
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