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We collect questions often asked by people around Cornelia de Lange syndroom, so you can search if your question is already asked. Each new question that is asked within our community is answered by a forum of experts with different expertises. We add links to helpful information, rewrite them to be understandable and share them 1. In this way we want to inform families, make them feel empowered and give them just that little bit of extra support.

Because if there is something typical for families with a care-intensive2 child like Cornelia de Lange syndroom, is that you will have a lot of questions. And we all want that you can remain upright, by showing that no question is too complicated or not worth asking. 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. ^
    • when the person that asked the question has given permission to share this. 
    • Sometimes, on request of the person that asked the question, we will change the names to anonynymous information to shield the privacy of your community member
  2. ^
    • care-intensive: a lot of questions (and answers to these) will be needed. A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Cornelia de Lange syndroom there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Cornelia de Lange syndroom family members are often, (forced to be), the advocate that needs to ask these questions for the better of their family member (or themselves!),
    • 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.

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Send a email: info@cdlsWorld.org