Told by Doctors That it Was “Just Stress,” Christie Discovered She Had Klippel-Feil Syndrome

Christie has Klippel-Feil Syndrome, a rare skeletal condition.

I was born with a congenital heart defect that went undetected for the first six months of my life. After the diagnosis, it was determined that I needed open heart surgery to live. The surgery was performed on 7/31/75, my “second” birthday. I came home from [...]

Hearing Loss Detected At Birth Leads To Rare Conditions Called Duane Syndrome and Klippel Feil Syndrome (KFS)

Thomas is in physical therapy, occupation therapy and speech therapy for Klippel Feil Syndrome

My name is Allison and our family was blessed with the birth of our third son, Thomas, a little over two years ago.  I had an uneventful pregnancy with Thomas and no complications. All ultrasounds showed a perfectly healthy baby, and when Thomas decided he [...]

Klippel-Feil Syndrome Alliance To Host First Annual KFS Awareness Day Exactly 100 Years After Discovery of Rare Disease

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On Monday, August 6th, Klippel-Feil Syndrome Alliance will have its first annual awareness day. Exactly one hundred years ago in 1912, Klippel-Feil Syndrome (KFS) was first reported by occupants of France, Maurice Klippel and André Feil. KFS is a rare skeletal condition characterized by abnormal [...]

Klippel Feil Syndrome Alliance Launched By KFS Patient Advocate

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Did you know that approximately 50% of rare diseases do not have foundations supporting them or working to find treatments or cures? Have you ever thought about starting a Facebook Group for your rare disease? Meet Sharon Rose Nissley. Sharon Rose or “Rosie” suffers from [...]