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

March 17, 2020

On behalf of the Cohen Syndrome Association it is with deep regret to announce that we are rescheduling the June 11, 2020 CSA conference to June, 2021. We will announce the future date once we have confirmed with the Embassy Suites based on their availability. This decision was made due to the spread of Coronavirus (COVID 19) that is affecting so many countries. This was not a decision that was made lightly and careful consideration was made for the best interest of families to recapture outlaid expenses and safety.

The CSA will keep registration rates for funds that remain in place however, we realize that some families will need a refund issued. Disclaimer note that if you are issued a refund please note the 2021 registration rate may differ depending on future cost.

To request a refund: please E mail Joann Holdorf, CSA Treasurer at:  Cohentreasurer@gmail.com

Provide full name, telephone number best contact information and mailing address. For families in the United States we will be sending a check to avoid paying additional fees to Paypal.

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

You may visit the hotel website for information on Covid-19 statement https://www.hilton.com/en/corporate/coronavirus/

If you need additional letters or notices to verify our conference rescheduling 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