Cornelia de Lange syndrome
Stories
Stories are written for and by people around Cornelia de Lange syndrome, so we know what we are talking about. We listen to all the stories, write them down and share them. And translate relevant news about Cornelia de Lange syndrome into readable articles. In this way we want to connect families, let them laugh and relax or give them just that little bit of support.
Because if there is something important for families with a care-intensive1 child 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.
The Cornelia de Lange syndrome (CdLS) is a rare genetic disorder of which many people have never heard of. Children with CdLS 'look' the same, there is a lot of similarity in appearance and behavior. In 1933, the Dutch pediatrician Cornelia de Lange described two children with a number of strikingly similar characteristics. The syndrome was therefore named after her.
CdLS can affect many parts of the body and individuals with CdLS may display physical, cognitive and behavioural characteristics. Cognitive characteristics are brain-based processes like memory and thinking. Behavioural characteristics refer to certain behaviours that individuals with CdLS are more likely to have. These characteristics can vary widely among affected individuals and range from small differences compared to other people to very noticeable differences. Our International panel of experts have put together a comprehensive guide to the diagnosis and management of CdLS, linked here!
