Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Teachers
Legislators
Media
Students
Researchers
Other
Range of services include:
Referrals to research studies
Referrals to matching individuals/families
Professional counseling
Peer support
Grief counseling
Referrals for non-medical services
Financial referrals
Non-medical services
Crisis intervention
Other
Peer-to-peer counseling
Awareness programs
Political action
Summer camp
E-mail list
Telephone helpline
Genetic information
Speakers
Training
Advocacy
Chat room
Other
Educational materials include:
Fact sheet(s)
Video(s)/Movie(s)
Slides
Journal articles on condition
Pamphlet(s)
Lending library
Booklet(s)
CD Roms
Research updates
Newsletter
Resource guide
Website
Student materials
Other
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals
Other
Financial assistance for: