Rare Rebels™
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.
Episodes
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.
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 ever make it across the finish line.
Shelley is a parent of children with Barth syndrome, and in this episode, she speaks from inside that reality. She talks about what happens when no one will care more than a parent — w...
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 the healthcare system but remain undiagnosed due to the subtle and complex nature of rare diseases.
In this episode, Léon explains how data models can detect patterns that clinicians may not recognize in isolation, revealing that there ...
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 Voice. With a background in market research, Wes recognized early on that healthcare organizations lacked ethical and effective ways to listen to patients, especially those navigating rare and complex conditions.
In this episode, Wes share...
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 at Courageous Parents Network, her work focuses on helping families navigate serious illness with clarity, compassion, and support, especially when there are no easy answers.
In this episode, Jennifer reflects on how her personal journ...
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 experience highlights the tension between how medicine is taught and how it is practiced when families are facing diagnoses that don’t fit neatly into standard systems of care.
In this episode, Megan reflects on the realities of medical ...
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 shares how that way of listening has shaped her work as a researcher and author, and why it matters so much in spaces where systems are fragmented and people are often left to navigate on their own.
The episode centers on Susannah’s b...
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 didn’t anticipate was how deeply personal rare disease work would become.
In this conversation, Emil shares how his relationship with families affected by MPS I, particularly his partnership with Mark Dant and his son Ryan, reshaped...
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 established pathways for drug development, Mark was a father who was told that nothing could be done for his son Ryan, who was diagnosed with MPS I.
In this conversation, Mark reflects on what it meant to refuse that answer. He shares h...
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 Rebels™, expanding from preserving family stories into exploring how awareness, connection, and action intersect in rare disease.
This short bridge episode explains the evolution and what to expect moving forward. ...
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 looking to highlight a specific diagnosis but rather the diverse experiences that allow us to step into the perspective of these families. This podcast will share how they are able to be present for joy amidst extremely difficult ...
https://www.musestorytelling.com/
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 document this time with them. Anja provides insight about why the teenage years should still be captured and how she captures meaningful moments for families through her photography and filmmaking.
----
Featuring Anja Poehlmann
https:/...
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 approach to photography for her son who is on the spectrum
07:14 Creating lifestyle wall art
12:30 Taking photos and making memories on their land
14:40 The story behind the name bewilder photography
16:20 What is a wall scroll?
1...
Melissa Ortendahl
https://www.melissaortendahlphotography.com/
https://www.instagram.com/melissaortendahlphotography/
----
View Melissa's Images of Joy: https://imagesofjoy.com/episode-3/
Follow us: https://www.instagram.com/images.of.joy
Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com
----
01:00 How Lolly got started in photography
01:34 Current professional photography focus
02:07 Motherhood - the push...
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 started in photography
01:34 Current professional photography focus
02:07 Motherhood - the push and pull for time and attention
03:30 “ Suspend your moments”
05:01 “Photography is a love letter to our children,” pr...
Watch Carter's video love note on the companion blog post: https://imagesofjoy.com/episode-8/
View Candice's image of joy on the companion blog: https://imagesofjoy.com/episode-7/
.
-----Guest info------
Candice Shuman
Candice Shuman Films & Photos
Ontario, Canada
Companion Blog: https://imagesofjoy.com/episode-5/
.
------Guest Info------
Anja Poehlmann
Brighton & Hove, UK
See Mandee's image of joy on the companion blog post: https://imagesofjoy.com/episode-4/
.
-----Guest info-----
Mandee Simas
Bewilder Photography
Muskoka, Canada
Popular Podcasts
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!
The Clay Travis and Buck Sexton Show. Clay Travis and Buck Sexton tackle the biggest stories in news, politics and current events with intelligence and humor. From the border crisis, to the madness of cancel culture and far-left missteps, Clay and Buck guide listeners through the latest headlines and hot topics with fun and entertaining conversations and opinions.
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by Audiochuck Media Company.