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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.

Kabuki Syndrome Network

a/k/a: KSN

Address

8060 Struthers Crescent
Regina
Saskatchewan, S4Y 1J3
Canada

Phone

306-543-8715

Fax

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800 Number

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TDD

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Email Address

margot@kabukisyndrome.com

Website

http://www.kabukisyndrome.com

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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