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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Share and Care Cockayne Syndrome Network, Inc.

a/k/a: SCCSN

Address

P.O. Box 282
Waterford, VA 20197
USA

Phone

703-727-0404

800 Number

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TDD

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Email Address

cockaynesyndrome@gmail.com

Website

http://www.cockayne-syndrome.org

The Share and Care Cockayne Syndrome Network, Inc. (SCCSN) is a support group providing information to families and professionals with an interest in Cockayne syndrome (CS). Cockayne syndrome is a rare form of dwarfism. It is genetic in that a recessive gene from each parent is necessary for a child to have CS. Other characteristics along with dwarfism include sun sensitivity, microcephaly, neurodevelopmental delay, mental deficiency (progressive), and loss of subcutaneous fat, premature aging, and shortened lifespan. A quarterly newsletter provides a forum for the exchange on information and a pamphlet is available in English, Spanish, Japanese, and German. The sharing of information helps people make informed decisions regarding the care of children with this rare disorder.

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