Cornelia-de-Lange-Syndrom

Cornelia-de-Lange-Syndrom


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

Das Cornelia-de-Lange-Syndrom (CdLS) ist eine genetische Erkrankung, die von Geburt an auftritt, aber nicht immer bei der Geburt diagnostiziert wird. Es verursacht eine Reihe von körperlichen, kognitiven und medizinischen Herausforderungen und betrifft beide Geschlechter gleichermaßen. CdLS diskriminiert nicht - es ist in allen Rassen und ethnischen Hintergründen zu sehen. Das Auftreten von CdLS wird auf 1 von 10.000 Lebendgeburten geschätzt

More detailed sections on Cornelia-de-Lange-Syndrom

We organize our answers about Cornelia-de-Lange-Syndrom 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-Syndrom there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Cornelia-de-Lange-Syndrom 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-Syndrom rather than the diagnostics.

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