Mighty Member since August 2015
Sharon Rose is an interior designer in the Chicagoland area and patient advocate who aims to defy rare disease. Nine years ago, at age 38 she was diagnosed with Klippel-Feil Syndrome after a lifetime of health related issues. She was then diagnosed with Ehlers-Danlos Syndrome, Cervical Dystonia and previously Vasculitis. She advocates actively for much needed treatments and understanding of Rare Diseases. She founded Klippel-Feil Syndrome Freedom. Her motto: Be a change-maker.