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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 syndromet (CdLS) er en sjælden genetisk lidelse, som mange mennesker aldrig har hørt om. Børn med CdLS 'ser' det samme ud, der er meget lighed i udseende og adfærd. I 1933 beskrev den hollandske børnelæge Cornelia de Lange to børn med en række slående lignende egenskaber. Syndromet blev derfor opkaldt efter hende.

CdLS kan påvirke mange dele af kroppen, og personer med CdLS kan have fysiske, kognitive og adfærdsmæssige egenskaber. Kognitive egenskaber er hjernebaserede processer som hukommelse og tænkning. Adfærdsmæssige egenskaber henviser til visse adfærd, som personer med CdLS er mere tilbøjelige til at have. Disse egenskaber kan variere meget blandt berørte individer og spænder fra små forskelle sammenlignet med andre mennesker til meget mærkbare forskelle. Vores internationale ekspertpanel har sammensat en omfattende guide til diagnose og styring af CdLS, der er linket her!


  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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