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.

Conference Announcement

November 29, 2020

To our CSA friends and families,

Given the current state of Covid-19 and unknown of 2021, the Cohen Syndrome Association board members have decided the 2021 conference will be virtually held. Our goal is always to put safety and families first and feel this is the best alternative for everyone. We will announce more updates once we have more details to provide to you.

Registration Fees:

The CSA will be issuing refunds for all outstanding registration fees and are requesting families to E mail CSA Treasurer Joann Holdorf at   Cohentreasurer@gmail.com

Please include your full name and contact information to avoid any refund delays.

We appreciate your understanding and hope everyone has a safe and enjoyable holiday season.

Please contact the Embassy Suites directly to cancel hotel reservations at 216 986 9900

If you need additional letters or notices to verify our conference change please contact me at:  Cohensyndrome@gmail.com

In closing, be diligent and know that we are praying for everyone’s continued health during this difficult time.

Lisa McElhinney

President Cohen Syndrome Association

Social Media

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 / Lisa McElhinney, President/ Dr. Heng Wang, DDC Clinic/ Diane Wargo, Secretary/ and Beth DeMarco Board member.

CSA Board