Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Health care professionals
Researchers
The public
Media
Range of services include:
Peer-to-peer counseling
Advocacy
E-mail list
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Newsletter
Journal
Research updates
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals
Current projects:
Conducting scientific meetings