Our information is written for and by people around sindrome di Cornelia de Lange, so we know what we are talking about. We search for information, rewrite them to be understandable and share them. And share relevant news about sindrome di Cornelia de Lange by readable articles. In this way we want to inform families, make the feel empowered to educate the cure- and care-people or give them just that little bit of support.

Because if there is something important for families with a care-intensive person like sindrome di Cornelia de Lange, it is that the family remain upright. 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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