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.

Cornelia de Lange syndrom (CdLS) er en genetisk lidelse til stede fra fødslen, men ikke altid diagnosticeret ved fødslen. Det forårsager en række fysiske, kognitive og medicinske udfordringer og påvirker begge køn lige meget. CdLS diskriminerer ikke - det ses i alle løb og etniske baggrunde. Forekomsten af CdLS anslås at være 1 ud af 10.000 levendefødte

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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