sindrome di Cornelia de Lange

sindrome di Cornelia de Lange

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

La sindrome di Cornelia de Lange (CdLS) è una malattia genetica presente dalla nascita, ma non sempre diagnosticata alla nascita. Provoca una serie di sfide fisiche, cognitive e mediche e colpisce allo stesso modo entrambi i sessi. Il CdLS non discrimina, è visto in tutte le razze e origini etniche. L'incidenza di CdLS è stimata in 1 su 10.000 nati vivi

More detailed sections on sindrome di Cornelia de Lange

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

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