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We collect questions often asked by people around Cornelia de Lange syndrome, 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. 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-intensive person like Cornelia de Lange syndrome, 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 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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