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 Learn how outdated narratives and clinical language can alienate patients—and how reframing them can build trust and support retention in care.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