Founder and Director, The Cute Syndrome Foundation
Hillary Savoie, PhD is the Founder and Director of The Cute Syndrome Foundation. She is also a writer, rare disease advocate, patient engagement consultant, and, most importantly, mother to Esmé. Esmé, the inspiration behind The Cute Syndrome Foundation, has variants in PCDH19, SCN8A, TBL1XR1, and MAP3K7. Hillary works to advocate and engage communities in order to improve the lives of children like Esmé. She also writes personal essays and reported features about life with medically-complex children which can be found on Romper.com, New York Times, Rolling Stone, and the podcast Story Collider, among others. Hillary holds a doctorate in Communication and Rhetoric from RPI.
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