Live | Bold | Unscripted
The Being Rare podcast examines how policy, clinical practice, innovation, and systems design shape the lived experience of rare disease. Rather than retelling individual stories in isolation, the podcast centers patient experience as expertise—interrogating how decisions are made, how care is delivered, and where systems succeed or fail families. Through focused conversations with advocates, clinicians, researchers, policymakers, and innovators, Being Rare advances informed dialogue that drives real-world impact.
What This Podcast Is—and Is Not
Being Rare is not a collection of inspirational stories or episodic testimonials. Those narratives matter—but here, they function as evidence. This podcast exists to examine how rare disease systems operate in practice: how guidelines translate into care, how policies shape access, how innovation succeeds or stalls, and how families navigate decisions inside structures they did not design. Lived experience is treated as a form of expertise. Patients and caregivers are not guests brought on to “share their story,” but contributors who analyze systems alongside clinicians, researchers, and decision-makers.
Each episode explores rare disease through a distinct system lens. These perspectives rotate intentionally to surface insight, avoid repetition, and keep the conversation grounded in impact.
We examine:
- Policy and real-world consequences — how laws, guidance, and regulations affect families in practice
- Clinical care as delivered — not just what is recommended, but what happens in exam rooms and hospitals
- Innovation that actually matters — tools, models, and ideas that change daily life for families
- Patient experience as expertise — lived experience used to interrogate systems, not merely describe them
- Decision-making inside institutions — how power, incentives, and constraints shape outcomes
From the Archive
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 mandate 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—has developed over time.
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Staying Connected
Being Rare is part of a broader body of work examining rare disease systems, policy, and care delivery.
To stay connected:
- Subscribe for new episodes and season announcements
- Follow along as conversations intersect with policy moments and convenings
- Engage with related initiatives through our other core programs
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.
The E.WE Foundation 