Our daughter shared briefly with adults that she felt "left out" after learning of Elijah's diagnosis from relatives. The adults immediately [seemingly] began to judge how we chose to tell our children. Listen as Sarita shares 60 seconds of Being Rare!

Ep 71. One Minute Monday - Feeling Judged

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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Ep 71. One Minute Monday - Feeling Judged

Ep 71. One Minute Monday - Feeling Judged

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