Sharon Rose is patient advocate for Klippel-Feil syndrome, which affects 1 in 42,000 people. Sharon founded Klippel-Feil Syndrome Freedom to help those who are also affected by this rare disease. She also has Ehlers-Danlos syndrome and Cervical Dystonia. She was honored to be nominated in 2013 and 2015 as a Global Genes Rare Champion of Hope and 2017 Rare Voice Nominee for Federal Advocacy. Sharon has written several articles for The Mighty. She is currently speaking out to Congress, to pass the Open Act, to bring forth better treatments, research, and medications for those with rare disease.