Adrienne Provost joined The H4H Rare Storytellers in 2015. Adrienne and our founder, Kerry Hughes, are fellow alumnae of Marquette University where the passion to “be the difference” began, but their bond has been forged through their journeys in Rare Disease advocacy.

Adrienne Provost lives in the northwest suburbs of Chicago with her husband, Peter, and their 3 teenaged children. Their family was thrust into the world of rare disease when their youngest child was born in 2005. Caroline was diagnosed at birth with Epidermolysis Bullosa (EB). EB is a genetic skin disorder characterized by missing or defective proteins, which usually would anchor the layers of skin together. Any slight pressure or friction causes the skin to tear away or form large blisters. There are numerous sub-types of EB, spanning a wide spectrum of lifespan prognoses and impact to daily living from relatively ‘mild’ to extremely debilitating and fatal.

For more information about EB, please visit www.debra.org.