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. 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 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.
Comprehensive guides
On this website you can browse trough a treasure of information, just roll down on your screen and pick one of the options!
The experts within our community have written a comprehensive guide to support you. (see the link directly below)
- 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
