Being Rare Podcast
Sarita EdwardsThe 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 ... more
| Publishes | Twice monthly | Episodes | 111 | Founded | 5 years ago |
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| Categories | Non-ProfitBusiness | ||||
Listen to this Podcast
Latest Episodes
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 ... more
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 condi... more
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 D... more
In this episode of the Being Rare Podcast, Sarita sits down with James Griffin and Genesis Jones, patient advocates and authors. We're talking about navigating life with sickle cell, healthcare bias, stigma, and more!
The books mentioned in this epi... more
In this episode of the Being Rare Podcast, Sarita sits down with NASM certified trainer and professional bodybuilder, Coach Jeff Benton to talk about the value of prioritizing self care into your daily routine.
Interested in personal training or ... more
In this episode, Sarita shares how self care became a forced priority. A planned medical procedure uncovered a near death health episode. Tune in to hear how Sarita transformed her health and changed her life. Watch the live recording: youtu.... more
In this Being Rare Podcast episode, Sarita is joined by Dr. Shane' Jackson, a wife, mom, minister, youth director, and two-time author to talk about transitioning from childhood to adulthood while navigating a medically complex diagnosis. Dr. Jackson... more
In this episode, Sarita is joined by her daughter Rian to talk about their 2025 ins and outs, being rare edition! Listen in to hear what they're leaving in 2024 and all that's welcomed in 2025.
Key Facts
Reviews
Sarita shares her heart in this podcast inspired by her son and their journey as a rare disease family. Her voice is velvety and loving and I appreciate her finding the silver linings in the circumstances she has faced. She interviews other rare disease parents and shares valuable resources. A rising star! ✨✨
Podchaser55 years agoEffie Parks
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Audience Metrics
Listeners, social reach, demographics and more for this podcast.
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How many episodes of Being Rare Podcast are there?
Being Rare Podcast launched 5 years ago and published 111 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
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