Rare Rebels™
The Rare Rebels™ Podcast shares raw, 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
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 circum...
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.
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Featuring Anja Poehlmann
https:/...
Join our Affinity group or apply for a mentorship: https://imageofjoy.com
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Mandee Simas
Bewilder Photography
https://www.instagram.com/bewilderphotos
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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?
16:55 In-Hous...
Melissa Ortendahl
https://www.melissaortendahlphotography.com/
https://www.instagram.com/melissaortendahlphotography/
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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
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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/
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Apply for the Family Filmmakers Certification Beta: https://imagesofjoy.com
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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,” preserving our stories
08:...
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/
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-----Guest info------
Candice Shuman
Candice Shuman Films & Photos
Ontario, Canada
Companion Blog: https://imagesofjoy.com/episode-5/
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------Guest Info------
Anja Poehlmann
Brighton & Hove, UK
See Mandee's image of joy on the companion blog post: https://imagesofjoy.com/episode-4/
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-----Guest info-----
Mandee Simas
Bewilder Photography
Muskoka, Canada
See Melissa's image of joy on the companion blog post: https://imagesofjoy.com/episode-3/
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------Guest Info------
Melissa Ortendahl Photography
Central, Massachusetts
https://www.melissaortendahlphotography.com/
https://www.instagram.com/melissaortendahlphotography/
Hello Storyteller
Companion blog post: https://imagesofjoy.com/episode-2/
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------Guest speaker------
Lolly's Lens Photography
Watch the companion film: https://imagesofjoy.com/episode-1/
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------Host Info------
Melody Joy Paine
Central, Massachusetts
Imperfect Joy Films & Photos
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