Share and Care Cockayne Syndrome Network
PO Box 282
Waterford, Virginia, 20197
703-727-0404
703-265-2009 (fax)
JackieClark@aol.com
http://www.cockayne-syndrome.org/
This is an international network that was founded in 1981. It offers mutual support and networking for families affected by Cockayne Syndrome (cachectic dwarfism). This includes the sharing of information between families and professionals, maintaining a registry of families, and providing referral information, a newsletter, phone support, and pamphlets (which are available in English, Spanish and Japanese).