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sharon rose nissley

Sharon Rose was diagnosed with Klippel-Feil syndrome 9 years ago, which explained lifelong medical issues. Soon four additional rare conditions were confirmed. As her career as director of interior design was sidelined, she faced disability.

These significant impacts quickly fueled her vision to empower others to educate themselves and advocate for their needs, to bring forth research and improved therapies. Despite ongoing medical needs, through the years, Sharon has contributed on several projects 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, The Mighty, Patient Worthy and Genetic Alliance.

Sharon Rose is the Founder and Executive Director of Klippel-Feil Syndrome Freedom, an international network of patients and families, which provides resources and support, to improve the lives of those affected by Klippel-Feil syndrome.

As a driven patient, she was nominated in 2013 and 2015 as a Global Genes Rare Champion of Hope, and was a 2017 Rare Voice Nominee for Federal Advocacy. She has written several rare disease articles including, "10 Ways to Get Involved With Rare Disease Day This Year", "Why I'm Stepping Out of My Comfort Zone and Into My Congressman's Office for Rare Disease", and "Awareness Day. A Vision for Klippel-Feil Syndrome."

Sharon continues as an interior designer in a limited capacity. She has worked at the same architectural firm for 20 years, where they have embraced her adaptations. She also enjoys using her graphic arts abilities on the powerful platform of social media, and has a specific interest in advocating for adults with rare disease. Sharon says, "You don't need a medical degree to advocate for rare disease, you just need genes".

She can be found on Twitter @Rose_of_ Sharon8