Kabuki Syndrome / Niikawakuroki Syndrome
Online. 560 members. Founded 1999. Mailing list that provides a forum for families with children with Kabuki syndrome to discuss the day to day issues of raising a child with Kabuki syndrome. Opportunity to share information regarding therapies. List is also open to medical and educational professionals who have an interest in Kabuki syndrome.
(BILINGUAL) International network. Founded 1997. Provides mutual support and information for families affected by Kabuki syndrome (aka Niikawakuroki syndrome). Coordinates family directory. Literature, phone support, pen pals, moderated listserv and newsletter. Brochure in English and Spanish available.
Kabuki Syndrome Network
8060 Struthers Cr
Saskatchewan, CANADA S4Y 1J3
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