Being Rare Podcast

Being Rare Podcast

Podcast af Sarita Edwards

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!

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109 episoder
episode Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report artwork
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

24. apr. 2025 - 42 min
episode Ep 106. Being Rare and Black: A Rare Disease Day Exclusive artwork
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

01. mar. 2025 - 55 min
episode Ep 105. Prioritizing Self Care Part 2: Finding What Works For You artwork
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

06. feb. 2025 - 37 min
episode Ep 104. Prioritizing Self Care Part 1: My Body Forced Me to Change artwork
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

30. jan. 2025 - 21 min
episode Ep 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood artwork
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.

23. jan. 2025 - 1 h 35 min
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