Kabuki Syndrome Network Inc (KSN) is a Canadian nonprofit organization dedicated to supporting individuals and families affected by Kabuki syndrome, a rare genetic disorder characterized by distinctive facial features, developmental delays, and multisystem abnormalities. Registered under Business Number 868766775RR0001, the organization provides global outreach through its international membership base and collaborative advocacy efforts.

History

Founded in the late 1990s by parents seeking peer support after their child's diagnosis, KSN evolved from informal online connections into a formally registered nonprofit. By leveraging early internet communication tools, the organization united families worldwide and became one of the first structured support networks for Kabuki syndrome. It formalized its status as a Canadian charitable entity to better coordinate resources and research initiatives[3].

Mission and Activities

KSN focuses on connecting affected families, disseminating educational resources, and promoting research into Kabuki syndrome. The organization collaborates with medical institutions, including genetic testing laboratories, to advance diagnostic and therapeutic understanding of the condition. While maintaining its Canadian nonprofit registration, KSN operates with a multinational volunteer team, including members from the U.S., to manage outreach and publications[3].

Global Network

As one of five global Kabuki syndrome support groups, KSN serves as a primary contact point for English-speaking communities, particularly in Central and South America. It fosters partnerships with similar organizations in Japan, Australia, France, and the Netherlands to share expertise and amplify advocacy efforts[3].

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