W elcome to the Kabuki Syndrome Network (KSN). We are a registered, non-profit charitable organization in Canada. However our membership is worldwide. We do not have a ‘central’ office. We are entirely run by volunteers, from various countries, and work from within our homes.
KSN has two main goals:
- to act as a source of information on Kabuki syndrome (KS) and
- to help families support each other by sharing their experiences
KSN's pages have been partially translated into the following languages: There are currently 4 other Kabuki support groups in the world:
Table of Contents
Facts about Kabuki
- Kabuki at a Glance
- Further defining Kabuki
- Evaluations
- Therapies
- Frequently Asked Questions
Reference Material
- list of journal articles
- dictionary of medical terms
- files of additional information
- brochure
Membership
- how to become a member of KSN
- what will membership provide you with?
- can now pay for membership via Paypal
Directory of Families
- what is the directory?
- sample entries
- register online
Survey Results
- check out the results of the KSN questionnaire sent to members
Join Our Email Discussion Group
- see examples of ongoing discussions
- participate in discussion with other KS family members
- open to medical/educational professionals as well
Links to Related Sites
- other kabuki sites
- disablilty
- reference
- education
Professional Advisory Group
- for professionals such as geneticists, pediatricians, educators and therapists
Bulletin Board
- participate in ground-breaking studies!
- announcements and advertisements of interest to families with kabuki
- want to post something on the board?
About KSN
- contact information
- make a donation!
- a history of KSN
- acknowledgements
