Being Rare Podcast

Sarita Edwards
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  • NON-PROFIT

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!

  1. 10/30/2025

    EP 109. Navigating Life with Ataxia SCA15

    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!

    25 min

  2. 08/28/2025

    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.

    51 min

  3. 04/24/2025

    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

    43 min

  4. 03/01/2025

    Ep 106. Being Rare and Black: A Rare Disease Day Exclusive

    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 episode can be found on Amazon. Direct links are below. Breaking Silence: Living with Sickle Cell Anemia by James Griffin III https://a.co/d/3znpc3s Rebirth: A Sickle Cell Warrior's Crossover (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/3lVQL7Z Resilient: Reflections of a Sickle Cell Journey (Warrior's Sickle Cell Poetry Collection) by Genesis Jones https://a.co/d/73XsFla

    56 min

  5. 02/06/2025

    Ep 105. Prioritizing Self Care Part 2: Finding What Works For You

    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 coaching? In-person and virtual options available. Personal instruction. Nutrition monitoring. One-on-one or group. Bodybuilding contest prep and coaching also available. Contact Coach Jeff to learn more: Email: jzb0149@auburn.edu Instagram: @the_eclipse615 Watch: https://buff.ly/4hMTIix

    37 min

  6. 01/30/2025

    Ep 104. Prioritizing Self Care Part 1: My Body Forced Me to Change

    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: https://youtu.be/B9LKxNeZgq0

    22 min

  7. 01/23/2025

    Ep 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood

    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's new book “A JOURNEY TO BEING” SAVED. HEALED. EVOLVING.: 30 DAYS OF DEVOTIONAL IMPARTATION is available for purchase on Amazon.

    1h 35m

  8. 01/16/2025

    Ep 102. Hello 2025: What's In, What's Out - Being Rare Edition

    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.

    52 min
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Trailer

About

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!

Information

  • Creator
    Sarita Edwards
  • Years Active
    2020 - 2025
  • Episodes
    111
  • Rating
    Clean
  • Copyright
    © Sarita Edwards
  • Show Website
    Being Rare Podcast