Cornelia de Lange Syndrome » What is CdLS?

What is CdLS?

Last modified by Gerritjan Koekkoek on 2012/12/16 13:10
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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
Research

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Created by Gerritjan Koekkoek on 2011/03/28 12:14

CdLS impressions

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World associations

CdLS is worldwide present, all information is available in English
but if you want to change the language click on a flag of one of the supportgroups in CdLS World
Number of associations: 15
Australia
Canada
Deutschland
CdLS Espagnol
France
Italia
Vereniging CdLS
Polska
Portugal
United Kingdom
United States
Danmark
日本
Schweiz, Suisse
CdLS World

Disclaimer - 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 at: umugler@aol.com
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