Cornelia de Lange syndrome

Cornelia de Lange syndrome


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 develop1
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-intensive2 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.

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!

More detailed sections on 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.

  1. ^
    • Your answers and information is yours and yours only.
    • we create a privat space for you only!
    • Your data can only be shared by yourself, not even by us! 
    • your information; you can use it whenever you need it! Often people with Cornelia de Lange syndrome are asked to fill in same like questionnaires again, no more, reuse the information you already have in your privat space.
  2. ^
    • care-intensive: people are special, they are not Cornelia de Lange syndrome but a unique person
    • care-intensive:A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Cornelia de Lange syndrome there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Cornelia de Lange syndrome family members are often, (forced to be), the advocate that needs to ask these questions for the better of their family member (or themselves!),
    • care-intensive: a word that we came up with, with which we focus on the experience of the care with Cornelia de Lange syndrome rather than the diagnostics.

About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.

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