Kabuki Syndrome / Niikawakuroki Syndrome

Self Help Clearinghouse

Kabuki Syndrome Network

(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.
Write:
Kabuki Syndrome
c/o Dean and Margot Schmiedge
8060 Struthers Court
Regina, Saskatchewan CANADA S4Y 1J3
Voice: Call Margot and Dean Schmiedge 306-543-8715
Website: http://www.kabukisyndrome.com
E-mail: margot@kabukisyndrome.com
Verified: 12/2/2009

KSN_L

Online. 560 members. Founded 1999. Kabuki Syndrome Network (KSN) mailing list 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.
Website: http://health.groups.yahoo.com/group/KSN_L
Verified: 6/22/2010