Share and Care Cockayne Syndrome Network, Inc.

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.