Episode 4: Megan Soliman | When Medicine Meets Lived Experience

Megan Soliman brings a rare dual perspective to this conversation as both a physician and a parent navigating rare disease. Her experience highlights the tension between how medicine is taught and how it is practiced when families are facing diagnoses that don’t fit neatly into standard systems of care.

In this episode, Megan reflects on the realities of medical training, including how little time is often dedicated to rare disease, and what that means for physicians trying to support families in real-world settings. We discuss the critical role of newborn screening, the importance of early diagnosis, and how families often need to actively advocate for timely access to services like early intervention.

The conversation also explores the emotional and developmental side of rare disease, particularly how language, confidence, and belief shape a child’s sense of self. The episode closes with a powerful and grounding moment as Megan’s daughter joins the conversation to share the phrase she’s been taught to live by: “I am capable.”

This episode adds an important layer to the Rare Rebels™ map, showing how systems of education, early care, and family advocacy intersect, and how change often begins when lived experience informs how medicine is practiced.

Guest: Megan Soliman — Internal medicine physician and rare disease parent whose experience navigating early diagnosis, newborn screening, and intervention exposes where medical training and systems still fail rare families, and where they can do better.

About Rare Rebels™ Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change happens and how connections across science, advocacy, and lived experience shape what becomes possible.