What is 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 one of the supportgroups of CdLS World, you’re taking an important step. 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 a supportgroup to request information packages

The CdLS support groups connected in CdLS world provides families, professionals and others with information about the syndrome. Please use the links on the left to learn more about the syndrome.

Characteristics of CdLS
Diagnosis of CdLS
Treatment Protocols
Best Practises
Frequently Asked Questions
Critical Care Information 

Information For Professionals

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.