Information
Our information is written for and by people around Cornelia de Lange syndrome, so we know what we are talking about. We search for information, rewrite them to be understandable and share them. And share relevant news about Cornelia de Lange syndrome by readable articles. In this way we want to inform families, make the feel empowered to educate the cure- and care-people or give them just that little bit of support.
Because if there is something important for families with a care-intensive person like Cornelia de Lange syndrome, it is that the family remain upright. And that is what we, as community around Cornelia de Lange syndrome, are committed to doing with heart and soul.
Cornelia de Lange syndrome (CdLS) is a rare genetic disorder. Many people have never heard of it. It causes various physical, cognitive and medical challenges.
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- Introduction
- What medical care may a child with CdLS need?
- Health difficulties in CdLS...
- Cognitive and behavioural characteristics in CdLS
- Age-related changes in cognition and behaviour
- Planowanie w celu zapewnienia jak najlepszej jakości życia
- Family Empowerment
- CdLS Spectrum Clinical Criteria (scoring)
- Moleculair diagnostic criteria
- Diagnostic approaches