Kabuki Syndrome Network

General Organizational Information
Organization Name: 
Kabuki Syndrome Network
Organization Acronym: 
KSN
Year Established: 
1997
Mission Statement: 
Kabuki Syndrome Network's two main goals are to act as a source of information on Kabuki syndrome (KS) and to help families support each other by sharing their experiences.
Professional/Medical Board?: 
Yes
501(c)3 Status?: 
No
Paid staff?: 
No
Board of Directors?: 
No
Serves the following conditions
Organizational Contact Information
First Name: 
Margot
Last Name: 
Schmiedge
Address: 
8060 Struthers Circle
Regina, S4Y-IJ3
Canada
See map: Google Maps
Phone: 
+1 306 543 8715
Email: 
margot@kabukisyndrome.com
Website Address: 
http://www.kabukisyndrome.com/
Resources and Services Provided
Languages spoken: 
Spanish
English
French
Printed materials available in: 
Spanish
English
Information provided for: 
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Teachers
Media
Students
Researchers
Other
Range of services include: 
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Peer support
Other
Peer-to-peer counseling
E-mail list
Telephone helpline
Other
Educational materials include: 
Fact sheet(s)
Membership directory
Journal articles on condition
Pamphlet(s)
Research updates
Newsletter
Bibliography
Website
Other
Conferences/workshops for: 
Other
Financial assistance for: 
Other
Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org