Being Rare is a community conversations platform bringing awareness and exposure to several different topics and how they relate to rare disease and the special needs community. Stay up to date on current conversations by subscribing now! 

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Send in a voice message: https://anchor.fm/beingrare/message
Support this podcast: <a href="https://anchor.fm/beingrare/support" rel="payment">https://anchor.fm/beingrare/support</a>

Being Rare is a community conversations platform bringing awareness and exposure to several different topics and how they relate to rare disease and the special needs community. Stay up to date on current conversations by subscribing now! --- Send in a voice message: https://anchor.fm/beingrare/message Support this podcast: https://anchor.fm/beingrare/support

Being Rare&nbsp;is a community conversations platform bringing awareness and exposure to several different topics and how they relate to rare disease and the special needs community. Stay up to date on current conversations by subscribing now! 

--- 

Send in a voice message: https://anchor.fm/beingrare/message
Support this podcast: <a href="https://anchor.fm/beingrare/support" rel="noopener noreferrer">https://anchor.fm/beingrare/support</a>

Being Rare - Trailer

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.

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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.

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Being Rare - Trailer

Being Rare - Trailer

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