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About CdLS

About CdLS

Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally. CdLS does not discriminate—it’s seen in all races and ethnic backgrounds. The occurrence of CdLS is estimated to be 1 in 10,000 live births.

Learning that your child may have CdLS may be hard to hear, but by contacting the CdLS Foundation, you’re taking an important step. Foundation staff is available by phone or email to offer support, connect you with other families, and provide information from medical, educational and behavioral experts.

Where should I go from here?

Contact the Foundation to request our free packet, Starting the Journey: Information and Support for New Parents. This packet of basic information helps you and your child—no matter how he or she is—receive the best start possible. It addresses topics related to growth and feeding, education, genetic information, and much more.

The CdLS Foundation provides families, professionals and others with information about the syndrome. Please use the links on the left to learn more about the syndrome.

Para obtener información CdLS en español, haga clic aquí.