Experience stories

Share your stories

Stories are written for and by people around Cornelia de Lange syndrome, so we know what we are talking about. We listen to all the stories, write them down and share them. And translate relevant news about Cornelia de Lange syndrome into readable articles. In this way we want to connect families, let them laugh and relax or give them just that little bit of support.

Because if there is something important for families with a care-intensive person like Cornelia de Lange syndrome, it is that the family remain upright. And that is what we, as community around Cornelia de Lange syndrome, are committed to doing with heart and soul.

Cornelia de Lange syndrome (CdLS) is a rare genetic disorder. Many people have never heard of it. It causes various physical, cognitive and medical challenges. Although no two children with this disorder are the same, there are many similarities in their appearance and behaviour.
Our international panel of experts has compiled a comprehensive guide to the diagnosis and care


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All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@cdlsWorld.org