Patients Have Power!

In this episode, I had the absolute pleasure of sitting down with Michele Rhee, Enzyvant’s Head of Patient Affairs. A simple job title doesn’t quite do her story justice: Michele’s road to patient advocacy involves a cancer diagnosis, a collapsed lung, a heart tumor, tears shared with her mother, and a fight to get the treatments that she knew she needed. And now, she uses all the experience she gained through her life as a patient and an advocate at Enzyvant. Michele and the Enzyvant team work to find a treatment for Farber disease, a rare disease that has about 80 reported cases world-wide [1], through patient engagement and education. We chat about how much she loves her work, how lucky she feels, and the power of a story to change the world. Michele is one of my role models in patient advocacy and I think you’ll see why as you listen to our chat! Zielonka, M et al. Genetics in Med. 2017; a cross-sectional quantitative analysis of the natural history of Farber disease