Sharon Rose Nissley, Klippel-Feil Syndrome Freedom

Patient Leader

Hi, I'm Sharon Rose I am an interior designer and volunteer rare disease patient advocate, both in moderation. I was diagnosed with Klippel-Feil syndrome (KFS) 10 years ago, which caused life altering chronic symptoms and debilitating pain. Klippel-Feil syndrome is a rare musculoskeletal condition which affects bone formation, namely in the spine, in the neck, and may affect other bones such as shoulders, ribcage and limbs. KFS can affect development and function of organs such as heart, kidneys, lungs, vision hearing, along with other systems of the body. KFS affects 1 in 40,000 people. I could not find care, current knowledge, or understanding in the medical space, or through an organization dedicated to KFS. I founded and serve as executive director of Klippel-Feil Syndrome Freedom. KFS Freedom empowers and unites patients and their families through peer support, education, research, and advocacy, for a lifetime of improved health care. KFS Freedom and I have been involved with organizations such as with Global Genes, Coordination of Rare Diseases at Sanford CoRDS, Rare Disease Legislative Advocates, National Organization for Rare Disorders, Harmony 4 Hope, ThinkGenetic, US Pain Foundation, INvisible Project, The Mighty, Patient Worthy and Genetic Alliance. This year I became a member of Rare Advocacy Movement. While I advocate for those of all ages who are affected by rare disease, I am most passionate for adults who have rare disease, as we are often underserved in the rare disease arena. I enjoy creating images both for KFS, and to share my rare patient message. I am most honored to be recognized for the volunteer effort of Klippel-Feil Syndrome Freedom. Please consider endorsing (voting for) these nominations below. Thank you!


Chicagoland, IL


Health Activist Hero Advocating for Another Lifetime Achievement Patient Leader 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

She's always there for the undiagnosed and making her voice heard for the most neglected in our community.  — Neena

I am nominating Sharon because she has brought together a community of those who suffer from KFS. it’s something that very few people knew about until she put together groups and information and she’s basically a leader for klippel feil syndrome. thank you sharon, we wouldn’t be able to support others without you.  — megan

Sharon Rose Nissley, Klippel-Feil Syndrome Freedom

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