Being Rare Podcast

Sarita Edwards
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Being Rare Podcast

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. MAR 1

    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

  2. FEB 6

    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

  3. JAN 30

    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

  4. JAN 23

    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

  5. JAN 16

    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

  6. 05/04/2024

    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!

    9 min

  7. 04/19/2024

    Ep 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention

    In this episode, Sarita talks about black maternal health and child abuse neglect and prevention. April 11-17 is Black Maternal Health Week. Black women are three times more likely to die from a pregnancy-related cause than white women. The month of April is dedicated to Child Abuse and Neglect Prevention. Children with disabilities are at least three times more likely to be abused or neglected than their peers without disabilities. Tune in as Sarita shares stats, a personal experience, and resources! Watch the live recording on YouTube: https://youtu.be/ECaXKysDPyA

    11 min

  8. 04/06/2024

    Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!

    In this episode of the Being Rare Podcast, Sarita kicks off the conversation celebrating the E.WE Foundation's 5th year anniversary and why she and her husband Kareem decided to establish the foundation, which leads into the challenges of micro-small nonprofit funding. Sarita shares the Trisomy 18 Newborn Screening Participation Research Survey hosted by the E.WE Foundation and led by student interns Harlie Williams and Michael Yun. The survey is for families with living or unalive children who have been diagnosed with Trisomy 18. The goal of the survey is to capture how families understand newborn screening and assess their personal experiences with newborn screening processes. Complete the survey by visiting the E.WE Foundation website at theewefoundation.org/newbornscreening or by accessing the following link: https://docs.google.com/forms/d/e/1FAIpQLSfZYlbRcsnOXA6sMFwF8M3OlDSEPWE2RyvnS4_EY0Uh_eqC9w/viewform RAREis_ Scholarship powered by our friends at the EveryLife Foundation for Rare Diseases and Rareis_. The scholarship is for adults 17+ years living with a rare disease. Applications are open until April 22, 2024. Learn more and apply at rarescholarship.org. 2024 MC Friend Bowl is an opportunity for exceptional students like Elijah to enjoy inclusive-styled games like football, baseball, basketball, and more! Students with disabilities are paired with students without disabilities to maneuver through sport stations and games. Elijah was paired with a high schooler who made sure he enjoyed the activities. Make sure to follow us on social media @beingrarepodcast. Find Sarita, Being Rare Podcast host on all social media platforms! Find our live recordings on YouTube, make sure to subscribe and turn on your notifications so you’ll know we upload new episodes. Find Being Rare Podcast wherever you stream and listen to your podcasts. Until the next episode, Be Rare!

    12 min
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Trailer

About

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!

Information

  • Creator
    Sarita Edwards
  • Years Active
    2020 - 2025
  • Episodes
    108
  • Rating
    Clean
  • Copyright
    © Sarita Edwards
  • Show Website
    Being Rare Podcast

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