Being Rare Podcast

Sarita Edwards
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Hosted by Sarita Edwards, Being Rare highlights the unique perspectives of individuals living with rare diseases. Through intimate—and sometimes difficult—conversations, we explore the challenges and triumphs of navigating everyday life with a rare diagnosis. Popular for our one-minute episodes, this talk radio-style platform addresses critical issues such as health equity, access to care, and mental health. We're not just patient stories, we're the patient experience! Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!

  1. 28 DE AGO.

    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.

    51min

  2. 24 DE ABR.

    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

    43min

  3. 1 DE MAR.

    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

    56min

  4. 6 DE FEV.

    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

    37min

  5. 30 DE JAN.

    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

    22min

  6. 23 DE JAN.

    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.

    1h35min

  7. 16 DE JAN.

    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.

    52min

  8. 04/05/2024

    Ep 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays

    In this episode, Sarita talks about - spending Saturday at the US Space and Rocket Center in Huntsville, AL supporting the Myositis Moonwalk - Mother's Day happening Sunday, May 12 - May being Mental Health Awareness Month - the E.WE Foundation's new Mental Health Training and Certification Program- the return of One Minute Mondays - and the passing of the Zachary Thomas Newborn Screening Act in Alabama. Tune in to check out the highlights and updates!

    9min
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Sobre

Hosted by Sarita Edwards, Being Rare highlights the unique perspectives of individuals living with rare diseases. Through intimate—and sometimes difficult—conversations, we explore the challenges and triumphs of navigating everyday life with a rare diagnosis. Popular for our one-minute episodes, this talk radio-style platform addresses critical issues such as health equity, access to care, and mental health. We're not just patient stories, we're the patient experience! Follow us on social media @beingrarepodcast. Got questions about the show? Email us - podcast@theewefoundation.org!

Informações

  • Criado por
    Sarita Edwards
  • Anos de atividade
    2020 - 2025
  • Episódios
    110
  • Classificação
    Livre
  • Copyright
    © Sarita Edwards
  • Site do podcast
    Being Rare Podcast