Cornelia de Lange syndrome

Cornelia de Lange syndrome


Information

Our information is written for and by people around Cornelia de Lange syndrome, 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 Cornelia de Lange syndrome 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-intensive1 child like Cornelia de Lange syndrome, it is that the family remain upright. And that is what we, as community around Cornelia de Lange syndrome, are committed to doing with heart and soul.

The Cornelia de Lange syndrome (CdLS) is a rare genetic disorder of which many people have never heard of. Children with CdLS 'look' the same, there is a lot of similarity in appearance and behavior. In 1933, the Dutch pediatrician Cornelia de Lange described two children with a number of strikingly similar characteristics. The syndrome was therefore named after her.

CdLS can affect many parts of the body and individuals with CdLS may display physical, cognitive and behavioural characteristics. Cognitive characteristics are brain-based processes like memory and thinking. Behavioural characteristics refer to certain behaviours that individuals with CdLS are more likely to have. These characteristics can vary widely among affected individuals and range from small differences compared to other people to very noticeable differences. Our International panel of experts have put together a comprehensive guide to the diagnosis and management of CdLS, linked here!

More detailed sections on Cornelia de Lange syndrome

We organize our information about Cornelia de Lange syndrome in topics. You can browse our topics below. Below each topic you might find more detailed topics with information that might be of interest to you.

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    • care-intensive: a lot of information is 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 syndrome must get the special cure or care that most people do not know about,
    • care-intensive: Because of the rare aspect of Cornelia de Lange syndrome family members are often, (forced to be), the advocate that can help by being better informed as their cure or care providers,
    • care-intensive: a word that we came up with, with which we focus on the experience of the care with Cornelia de Lange syndrome rather than the diagnostics.

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