Live | Bold | Unscripted
Where lived experience meets leadership, systems, and strategy
The Being Rare podcast examines how policy, clinical practice, innovation, and institutional decision-making shape the lived experience of being rare, whether as a patient, caregiver, clinician, advocate, or leader. Hosted by Sarita Edwards, Being Rare extends beyond storytelling. Each conversation brings together diverse perspectives to challenge assumptions, uncover blind spots, and drive more effective, equitable outcomes.
This is not just a podcast about rare diseases. It is a platform for examining complex systems and how they must evolve.
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You’re in the Conversation
Being Rare in Community
InspireThread creates advocacy-focused apparel that uplifts rare disease awareness and lived experience. When you shop using the link below, a portion of proceeds helps sustain our mission—at no additional cost to you.
Visit InspireThread today and use code beingrare10 at checkout for an exclusive listener discount.
InspireThread is an independent brand. This affiliate partnership helps support the Being Rare podcast.
From the Archives
Earlier episodes of Being Rare reflect the podcast’s formative years and the personal experiences that shaped its evolution. These conversations predate the current editorial direction and are preserved as part of the podcast’s history. While their format differs from newer episodes, they provide important context for how this work and the thinking behind it have developed over time.
🎧 Listen to archived episodes anywhere you stream your podcasts
📺 Watch archived episodes on YouTube
The E.WE Foundation 