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.
P.O. Box 282
Waterford, VA 20197 USA
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.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.