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These questions and answers are collected for and by people with Cornelia de Lange Syndrome () and professional experts around .
In doing so, we believe to be a helpful resource for those affected by in their search for answers. Rare, but strong together!
Cornelia de Lange syndrome (CdLS) is a rare genetic disorder. Many people have never heard of it before. It causes several physical, cognitive and medical challenges. Although no two children with this condition are the same, there are many similarities in the external features and behaviour.
- deepen your knowledge
- Introduction
- Levensfases
- 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
- Planning for best quality of life
- Family Empowerment
- CdLS Spectrum Clinical Criteria (scoring)
- Moleculair diagnostic criteria
- Diagnostic approaches
