Sharon Rose Nissley, Klippel-Feil Syndrome Freedom

Patient Leader

Rare Disease Activist | Creator | Interior Designer | Beagle Lover | Artist | Reader | Swims the Sea | Learner | Helper | Dreamer As a patient advocate for rare disease I am humbled to be nominated for these awards! Thank you! I founded Klippel-Feil Syndrome Freedom to help those who, like myself, have this rare, congenital musculoskeletal condition, and their families. I aim to improve the lives of those who have rare diseases. We've got several projects in the works! I am also currently advocating for the 21st Century Cures Act and the Open Act, to bring forth better treatments, research, and medications for those with rare disease and beyond. #CuresNow #KFStrong


Health Activist Hero


Advocating for Another

Sharon is a one-woman show who runs the leading organization for Klippel-Feil syndrome, a rare and debilitating spine condition. She is a source of hope for hundreds of patients who have nowhere else to turn. Her organization runs several support groups on Facebook, holds fundraisers and awareness events, advocates for patients' rights, and more.  — Emily

Sharon Rose Nissley, Klippel-Feil Syndrome Freedom

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