Sharon Rose Nissely of Klippel-Feil Syndrome Freedom has launched a new Facebook page where patients can join a vibrant #KFStrong community.
This rare skeletal condition affecting 1 in 42,000 people, is often misunderstood as a simple fusion of bones in the neck. This is a myth. Klippel-Feil Syndrome involves many organs and systems of the body, and includes associated conditions that are not yet clarified. Much is to be learned about KFS. Klippel-Feil Syndrome needs research & understanding based on truth from patients and families who face KFS daily.
This new organization aims to broaden and improve the understanding and knowledge of Klippel-Feil Syndrome, and related conditions, to improve care for a lifetime, through research and advocacy, with their new online community location!
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