The Being Rare podcast intersects rare disease, leadership, and systems change. It examines how policy, clinical practice, innovation, and institutional decision-making shape the lived experience of being rare, whether as a patient, caregiver, clinician, advocate, or leader.
Hosted by Sarita Edwards, Being Rare extends beyond storytelling. Each conversation brings together diverse perspectives to challenge assumptions, uncover blind spots, and drive more effective, equitable outcomes.
Follow Being Rare today, wherever you stream your podcasts!
In this episode of the Being Rare Podcast, host Sarita Edwards sits down with Michael Mantz, a business owner, writer, and advocate living with Ataxia SCA15, a rare and progressive neurodegenerative disorder.
From his forthcoming memoir to building a community that celebrates resilience, this conversation is all about showing up authentically, even when life feels unsteady. Through his blog and new brand Inspire Thread, Michael brings visibility to those navigating rare, invisible, or progressive conditions.
Hear more from Michael and his journey in today's episode!
28 Aug 2025
EP 108. Big Ride, Bigger Mission with Royce Robertson
In this episode, Sarita sits down with Royce Robertson—a husband, father, patient, and advocate. Royce shares his personal journey of being misdiagnosed and nearly undergoing a critical procedure before discovering he had cardiac sarcoidosis, a condition many healthcare providers still know little about.
Royce started cycling to raise awareness and push for equitable healthcare access for all families, especially those in rural and underserved communities. This episode highlights race, misdiagnosis, gaps in provider knowledge, and how Royce turned pain into purpose.
Tune in for a conversation about resilience, advocacy, and what it really takes to pay it forward. Follow Royce on Instagram @cycle4sarc.
24 Apr 2025
Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report
In this episode, Sarita is joined by Jenifer Waldrop, Executive Director of the Rare Disease Diversity Coalition (RDDC), to discuss the Inequities in the Rare Disease Community Report completed in partnership with the National Organization for Rare Disorders (NORD).
This research involved over 2,800 participants and sheds light on the barriers faced by underrepresented patients with rare diseases.
Tune in as we delve into this groundbreaking national survey, while offering critical insights into healthcare access challenges.
Learn more about RDDC and NORD:
RDDC at rarediseasediversity.org
NORD at rarediseases.org
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
YouTube views
55,032
Score snapshot 15 Sept 2025
Spotify
5.0 / 5
1 ratings
Podcast Authority Score: 64 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
74
Social presence
0
YouTube
76
Engagement
60
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