Welcome to Cohen Syndrome Association

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.

We are fundraising for our next Cohen Syndrome family conference so please visit the Family Gathering page to learn how you can help !


The CSA will be celebrating our 10 year anniversary this June during our next conference in Ohio.  Visit our registration page to learn more at http://www.cohensyndrome.org/2018-conference-registration/

Lisa McElhinney
President CSA

Cohen Syndrome | COH1 | Pepper Syndrome - International Parent Association for Children with Cohen Syndrome










There are several active parent groups on Facebook where families connect with each other. This provides all new families much insight into daily living for our kids. Search for Parents of Children of Cohen Syndrome and Cohen Syndrome and the undiagnosed on Facebook to join in the conversation !

Please also join the Cohen Syndrome Association page on Facebook to keep updated on news and events.

Shown  below from left to right : Joann Holdorf , Treasurer /Diane Wargo, Secretary/ Dr. Heng Wang, DDC Clinic and Medical Adviser  and Lisa McElhinney, President


Cohen Syndrome - We are an international association that provides resources and education for families and professionals about Cohen Syndrome. Cohen Syndrome is also known as COH1 & Pepper Syndrome.