Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Teachers
Media
Students
Researchers
Other
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Professional counseling
Medical referrals
Rehabilitation resource referrals
Peer support
Grief counseling
Referrals for non-medical services
Financial referrals
Non-medical services
Other
Peer-to-peer counseling
Genetic testing
Rehabilitation services
Awareness programs
E-mail list
Genetic information
Clinical or treatment centers
Pen pal program
Genetic counseling
Training
Advocacy
Chat room
Other
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Research updates
Newsletter
Resource guide
Website
Other
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals
Other
Financial assistance for:
Medical care
Organizational
Transportation
Assistive devices
Other
