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.
January, 2026
Dear CSA community,
We would like to announce some changes as the CSA will officially be closing our association after realizing it’s time for others to continue the mission. With our founding in 2008 we have been successful with creating the family network so that no family has to travel this journey alone.
From five families sitting at a table in Ohio in June 2008 we have had an amazing journey and have connected with many since our inception. We are closing effective 1.31.2026 however the mission will continue.
We believe this transition is for the greater good of the Cohen Syndrome community. To that end, we are proud to announce that the Cohen Syndrome Research Foundation (CSRF) will continue our legacy of connecting families and facilitating gatherings. Ashley Waterman and her board have made extraordinary progress, and we believe our community is strongest when we are united under one vision.
The CSRF carries our full endorsement and our deepest hopes for the future. We invite you to join us in supporting their mission as they lead the way forward. Thank you for being part of our family for the last 18 years.
Lisa McElhinney
Cohen Syndrome Association
