Cornelia de Lange syndrome

Cornelia de Lange syndrome


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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 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 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 developmental disorder that is present from birth. The syndrome was named after the Dutch children’s doctor Cornelia de Lange, who first described the disorder in 1933. It is estimated that between 1 in 10,000 and 1 in 30,000 people in the population have CdLS.

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.

More detailed sections on Cornelia de Lange syndrome

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

  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 syndrome there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Cornelia de Lange syndrome 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 syndrome rather than the diagnostics.

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