Information
Our information is written for and by people around Cornelia de Lange syndroom, 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 syndroom, it is that the family remain upright. And that is what we, as community around Cornelia de Lange syndroom, are committed to doing with heart and soul.
Het Cornelia de Lange syndroom (CdLS) is een zeldzame genetische aandoening. Veel mensen hebben er nooit eerder van gehoord. Het zorgt voor verschillende lichamelijke, cognitieve en medische uitdagingen. Al zijn geen twee kinderen met deze aandoening hetzelfde, er is wel veel overeenkomst in de uiterlijke kenmerken en het gedrag.
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
