Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Parents
Fathers
Mothers
Siblings
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
Peer Support
Professional counseling
Crisis intervention
Medical referrals
Clinical or treatment centers
Genetic information
Rehabilitation resource referrals
Referrals for non-medical services
Non-medical services
Financial referrals
Political action
Awareness Programs
Advocacy
Speakers
Telephone helpline
Chat room
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Magazine
Website
Newsletter
Journal articles on condition
Slides
Video(s)/Movie(s)
CD Roms
Audiotape(s)
Resource guide
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Financial assistance for:
Medical care
Transportation
Assistive devices
Scholarships
Cohort Development:
Registry of affected individuals
Research Management:
Awarding research grants
Providing information about clinical trials