Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.

Diseases

Genetic and Rare Diseases Information Center (GARD)

Print friendly version

Cornelia de Lange syndrome


Other Names for this Disease
  • Brachmann de Lange syndrome
  • CDLS
  • De Lange syndrome
  • Typus degenerativus amstelodamensis
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Your Question

My niece was diagnosed with this syndrome. Could you put me in touch with other families who have experience with this syndrome? From the information we found online, I believe that those children are mentally disabled. Could you please confirm that this is true and that ALL the kids with this syndrome will be mentally disabled?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Does everyone with Cornelia de Lange syndrome have intellectual disability?

Intellectual disability is a common feature of Cornelia de Lange syndrome, occuring in more than 95 percent of people with this condition.[1] The IQ test is one tool for measuring intelligence, and a score below 70 indicates that a person has intellectual disability.[2] IQ scores in people with Cornelia de Lange syndrome range from 30 to 102, so there have been some people with IQ scores in the normal range.[1] The average IQ score for people with Cornelia de Lange is 53.[1]
Last updated: 11/29/2012

How can I find other families with Cornelia de Lange syndrome?

Visit our section on Organizations to find a list of groups dedicated to Cornelia de Lange syndrome. You can contact these organizations to get in touch with other families.
Last updated: 11/29/2012

References