Experience stories

Stories

Stories are written for and by people around Cornelia de Lange syndroom, 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 syndroom 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-intensive1 child like Cornelia de Lange syndroom, it is that the family remain upright. And that is what we, as community around Cornelia de Lange syndroom, 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.

In 1933, the Dutch paediatrician Cornelia de Lange described two children with strikingly similar characteristics. The syndrome was therefore named after her.

CdLS can manifest itself in different areas and individuals with CdLS can show specific physical, mental and behavioural characteristics. Mental characteristics are brain processes such as memory and thinking. Behavioural characteristics refer to certain behaviours that individuals with CdLS are more likely to display. These characteristics can vary greatly between individuals and range from small differences compared to other people to very noticeable differences. Our international panel of experts has compiled a comprehensive guide to the diagnosis and care


  1. ^ care-intensive: a lot of care is needed. A care-intensive child is a child with a physical, mental or behavioural disability (or a combination thereof) that requires extra care.
    care-intensive: a word that we came up with, with which we focus on the experience of the care with Cornelia de Lange syndroom rather than the diagnostics.

More detailed sections on Cornelia de Lange syndroom

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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