Miriam Wilms on navigating rare disease healthcare as both a mother and a specialist surgeon

In this episode of EURORDIS Rare on Air, host Julien Poulain speaks with Dr. Miriam Wilms, a visceral surgeon, proctologist, and mother whose son was born with a rare anorectal malformation. Miriam shares the early challenges her family faced within Germany’s decentralised healthcare system, from securing specialised surgeries for her son to coordinating his long-term care needs.

As an advocate with SoMA, a German organisation supporting families impacted by anorectal malformations, Hirschsprung's disease, and cloacal exstrophy, Miriam discusses how her dual roles as a parent and medical professional have uniquely shaped her perspective on rare disease care. She explains why centralising highly specialised treatments is important for improving patient outcomes and reducing healthcare costs and outlines her vision for the systemic changes needed to support rare disease families across Europe.

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