May 14, 2025

From Diagnosis to Advocacy: What Rare Disease Teaches Us About CME

From Diagnosis to Advocacy: What Rare Disease Teaches Us About CME
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From Diagnosis to Advocacy: What Rare Disease Teaches Us About CME

How do we create continuing education that prepares clinicians to deliver life-changing diagnoses with both precision and compassion?
In this episode, we explore what happens when the scientist’s role as a communicator intersects with the lived experience of parenting a child with a rare disease. I'm talking with Dr. Jennifer Brown, a geneticist who recently published a memoir, When the Baby is not OK: Hopes and Genes, based on her experience of parenting children diagnosed with PKU through newborn screening.

For CME professionals, this episode is a call to rethink how we center narrative, ethics, and emotional intelligence in our content, especially when evidence alone isn’t enough to support meaningful patient care.

  • Learn how outdated narratives and clinical language can alienate patients—and how reframing them can build trust and support retention in care.

  • Hear why integrating lived experience into CME is essential for designing education that resonates beyond the exam room.

  • Discover how personal storytelling, ethical reflection, and patient advocacy can enrich data-driven CME writing.


▶️ Press play to discover how Dr. Jennifer Brown’s dual lens—as a geneticist and parent—can sharpen your skills as a more empathetic, informed CME professional.


Connect with Jennifer

LinkedIn

Goodreads 

Author Site

Bluesky

YouTube



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