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

Past Awards Participation

Fifth Annual Health Activist Awards


Health Activist Hero


Advocating for Another
Sharon Rose Nissley, Klippel-Feil Syndrome Freedom

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