Self study

Selfstudy by Questionnaires and Scorecards

Nobody with Cornelia de Lange syndrome is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how Cornelia de Lange syndrome has impacted your life, how you develop.
When you discover which aspects of Cornelia de Lange syndrome impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.

Because if there is something typical for families with a care-intensive person having Cornelia de Lange syndrome, is that you will see similarities with others having Cornelia de Lange syndrome, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with Cornelia de Lange syndrome that have approximately provided the same answers to our questionnaires and have similar scorecards.

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. Although no two children with this disorder are the same, there are many similarities in their appearance and behaviour.
Our international panel of experts has compiled a comprehensive guide to the diagnosis and care

Deepen your knowledge of Cornelia de Lange syndrome

We organize our data about Cornelia de Lange syndrome in topics. You can browse our topics below. Below each topic you might find more detailed topics with data that might be of interest to you. blob