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Genetic and Rare Diseases Information Center (GARD)

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Cornelia de Lange syndrome

Other Names for this Disease
  • Brachmann de Lange syndrome
  • CDLS
  • De Lange syndrome
  • Typus degenerativus amstelodamensis
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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