Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Health care professionals
Researchers
The public
Students
Media
Legislators
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Genetic information
Rehabilitation resource referrals
Referrals for non-medical services
Political action
Advocacy
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Newsletter
Research updates
Video(s)/Movie(s)
CD Roms
Resource guide
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals