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We collect questions often asked by people around sindrome di Cornelia de Lange, 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 sindrome di Cornelia de Lange, 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 sindrome di Cornelia de Lange, are committed to doing with heart and soul.

La sindrome di Cornelia de Lange (CdLS) è una rara malattia genetica di cui molte persone non hanno mai sentito parlare. I bambini con la CdLS "hanno lo stesso aspetto", c'è molta somiglianza nell'aspetto e nel comportamento. Nel 1933, il pediatra olandese Cornelia de Lange ha descritto due bambini con una serie di caratteristiche sorprendentemente simili. La sindrome prese quindi il suo nome.
Il nostro panel internazionale di esperti ha messo insieme una guida completa alla diagnosi e alla gestione della CdLS, collegata qui!

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