Being Rare Podcast
- Business · Non-Profit
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About
Hosted by Sarita Edwards, Being Rare examines how policy, clinical practice, innovation, and systems shape the lived experience of rare disease. Patient experience is treated as expertise, guiding conversations with advocates, clinicians, researchers, and policymakers. Earlier episodes reflect formative discussions; newer episodes focus on systems, decision-making, and real-world impact. Explore the latest episodes to hear how lived experience, policy, and innovation intersect—and see how Being Rare shapes real-world change in rare disease ecosystems.
Also on
Recent episodes
- EP 109. Navigating Life with Ataxia SCA15
- EP 108. Big Ride, Bigger Mission with Royce Robertson
- Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report
- Ep 106. Being Rare and Black: A Rare Disease Day Exclusive
- Ep 105. Prioritizing Self Care Part 2: Finding What Works For You
- Ep 104. Prioritizing Self Care Part 1: My Body Forced Me to Change
- Ep 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood
- Ep 102. Hello 2025: What's In, What's Out - Being Rare Edition
- Ep 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays
- Ep 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention