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
Medical referrals
Peer support
Other
Awareness programs
E-mail list
Telephone helpline
Genetic information
Clinical or treatment centers
Other
Educational materials include:
Fact sheet(s)
Membership directory
Video(s)/Movie(s)
Pamphlet(s)
Booklet(s)
Research updates
Newsletter
Website
Other
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Other
Financial assistance for: