Information provided for:
Affected individuals
Families of affected individuals
Care providers
Health care professionals
Researchers
The public
Teachers
Students
Media
Legislators
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Crisis intervention
Medical referrals
Clinical or treatment centers
Non-medical services
Political action
Advocacy
Telephone helpline
E-mail list
Educational materials include:
Website
Newsletter
Journal articles on condition
Research updates
Resource guide
Membership directory
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals