EDSKC Collaboration Inc. is a community of patients and supporters collaborating with health care professionals and researchers to accelerate awareness, diagnosis, care and treatment of Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD) and related conditions.
We are a group of volunteers working together to support education initiatives, advocacy, research, community-building and care for the EDS and HSD populations.
Our goals are to increase awareness and education in the Kansas City and the surrounding areas to enable faster diagnosis with more specialized, coordinated care.
EDSKC Collaboration Inc. was established as a nonprofit organization in 2018 by Wendy Cogan and Fred Stein, two first cousins diagnosed with hEDS who suffered undiagnosed for many years with life altering and, at times, life threatening conditions associated with EDS.
Although EDS is genetic from birth, Wendy started experiencing significant symptoms in her teens while Fred was impacted much later in life in his early 30s. Wendy and Fred's grandmother and grandfather passed from cerebral aneurysms at ages 55 and 60. In addition, Wendy's father (Fred's uncle) died of a cerebral aneurysm at age 54. Their great aunt also passed away from a cerebral aneurysm in her 70s.