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Notice: This site is no longer being actively maintained. While much of the information is still relevant, some of it has become out-of-date.

There are several Facebook groups. Just search "Kabuki syndrome" from within Facebook.

For a current site see one of the following:

http://allthingskabuki.org
https://www.kabukisyndromefoundation.org

About KSN

Brief History of KSN

1997

Schmiedges begin first contacts with other families

1998

Compilation of published journal articles and creation of medical dictionary
First family directory is mailed
Website is created

1999

First newsletter is mailed
Inception of mailing list
KSN becomes incorporated in Saskatchewan

2000

KSN becomes a charitable non-profit organization within Canada

2005

First brochure is produced

2011

Current website is created
Brochure is updated

Kabuki Syndrome Network

Kabuki Syndrome Network (KSN) was founded by Margot Schmiedge in 1997 and established as a charitable non-profit organization in Canada in 2000. KSN is run by volunteer parents from all corners of the world, within our own homes.

KSN’s goals are:

to act as a source of information on Kabuki syndrome

to facilitate networking amongst families and professionals

to support research activities

Together we strive to support families and professionals so that we may be in the best position to aid in the healthy development of our children.

Acknowlegements

Thanks goes to Dean Schmiedge for his accounting expertise.

Thanks goes out to Ed Zwart, Margot's brother, and Janice Banser, Ed's partner, for their help in the construction and design of this website. Their many hours of donated time toward this cause is very much appreciated! If you like this site and require their services, you can contact them at Softserv Innovation.

Thanks to Netwerk Kabuki Syndroom for allowing us to use the logo which you see on the top of each page. It was designed by Jos Vergouwen, the contact for the Dutch group. Jos describes the logo as follows: "The logo is derived from the first Japanese character sign of the word Kabuki syndrome. The first thing you see is the elegant letter K. If you look more closely, you see a person standing with both arms outstretched, which symbolises the invitation to network with one another."