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Kabuki Syndrome Network


Address

8060 Struthers Crescent
Regina
Saskatchewan, S4Y 1J3 Canada

Phone

3065438715

Description

The Kabuki Syndrome Network is a voluntary, non-profit organization whose mission is to act as a source of information on Kabuki syndrome and to help families support each other by sharing their experiences. Kabuki syndrome is a rare disorder characterized by a wide spectrum of physical findings and symptoms including characteristic facial features, mild to moderate intellectual impairment, diminished muscle tone (hypotonia), skeletal abnormalities, and/or congenital heart defects. Physical findings and symptoms vary greatly from case to case. KSN provides a bi-annual newsletter to its members. The network compiles and maintains a family directory of those affected by Kabuki syndrome. It also provides information on Kabuki syndrome, a list of references for further information, and a list that defines the various medical terminology associated with Kabuki syndrome. A newsletter (The Kabuki Journal) is mailed to KSN's members twice a year.

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