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We collect questions often asked by people around síndrome de Cornelia de Lange (CdLS), 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 síndrome de Cornelia de Lange (CdLS), 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 síndrome de Cornelia de Lange (CdLS), are committed to doing with heart and soul.

El Síndrome Cornelia de Lange (SCdL) es una enfermedad rara del desarrollo que está presente desde el nacimiento. El síndrome recibe el nombre de la pediatra holandesa Cornelia de Lange, que describió el trastorno por primera vez en 1933. Por lo tanto, el síndrome fue nombrado en su honor

CEl SCdL puede afectar a diversas partes del cuerpo y las pacientes con SCdL pueden mostrar rasgos físicos, cognitivos y de conducta. Los rasgos cognitivos son procesos cerebrales tales como la memoria y el pensamiento. Las características de comportamiento se refieren a ciertos comportamientos que los pacientes con SCdL es más probable que tengan. Estas características pueden variar considerablemente entre los afectados y van desde pequeñas diferencias con respecto a otras pacientes hasta diferencias muy evidentes.Nuestro panel internacional de expertos ha elaborado una guía completa para el diagnóstico y el tratamiento de la CdLS, enlazada aquí

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

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