This Being Rare Podcast episode is continuing the conversation about newborn screening and how The Edwards did not receive the screening test for their son, Elijah.

Ep 88. A Poor Newborn Screening Experience

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.

Business

Non-Profit

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.

Share Ep 88. A Poor Newborn Screening Experience

Sign up to save your podcasts

Ep 88. A Poor Newborn Screening Experience

Ep 88. A Poor Newborn Screening Experience

More shows like Being Rare Podcast

Scamanda