Cohen Syndrome is a rare genetic disorder associated with mutations present at COH1 within chromosome 8 and is often undiagnosed for many years. Globally fewer than 1000 cases have been reported.
The Cohen Syndrome Association was founded by parents to raise awareness of this disease with the goal of educating parents and professionals to assure earlier diagnosis and medical interventions.
The Cohen Syndrome Association was founded in 2008 as a result of a family gathering in Middlefield, Ohio thanks to a call for parent leadership from the DDC Clinic for Special Needs Children. Parents that were committed in raising awareness with the goal of earlier diagnosis is why we are here to make this difference for others that are traveling down this same path.
Since its inception the CSA has grown from a small group of parents to a global presence where we are empowering each-other with knowledge and support for our families.