Being Rare Podcast

Por: Sarita Edwards
Hosted by rare disease advocate Sarita Edwards, Being Rare is a talk radio–style podcast that explores the issues shaping the rare disease and health equity landscape. Each episode dives into real conversations at the intersection of policy, practice, and patient experience. Through bold, unscripted discussions with thought leaders, clinicians, advocates, and changemakers, we'll talk about health equity, access to care, innovation, policy, community, and collaboration.

Follow us on social media @beingrarepodcast. Got questions about the show? Email us - [email protected]!
111 episodios disponibles

Latest episodes of the podcast Being Rare Podcast

EP 109. Navigating Life with Ataxia SCA15 30/10/2025
EP 108. Big Ride, Bigger Mission with Royce Robertson 28/08/2025
Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report 24/04/2025
Ep 106. Being Rare and Black: A Rare Disease Day Exclusive 01/03/2025
Ep 105. Prioritizing Self Care Part 2: Finding What Works For You 06/02/2025
Ep 104. Prioritizing Self Care Part 1: My Body Forced Me to Change 30/01/2025
Ep 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood 23/01/2025
Ep 102. Hello 2025: What's In, What's Out - Being Rare Edition 16/01/2025
Ep 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays 04/05/2024
Ep 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention 19/04/2024
Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More! 06/04/2024
Ep 98. What Are You Telling Families Who Get A Trisomy 18 Diagnosis? 22/03/2024
Ep 97. March is Trisomy Awareness Month & Women's History Month 08/03/2024
Ep 96. How We Chose to Navigate the Holidays and the Final "Happy New Year" of 2024! 30/01/2024
Ep 95. We Haven't Spoken Since Last Year, Happy New Year! 11/01/2024
Ep 94. Navigating the Holidays with Rare Disease #podcast #holidays #raredisease #selfcare 04/12/2023
Ep 93. Overwhelmed by Grief #podcast #grief #raredisease #trisomy18 04/11/2023
Ep 92. Know Your Family History: A Conversation About Health Legacy #podcast #family #health #legacy 27/10/2023
Ep 91. Let's talk about Newborn Screening in Alabama 29/09/2023
Ep 90. Who's responsible for providing parents newborn screening information? #podcast 14/09/2023
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