Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Health care professionals
The public
Media
Range of services include:
Clinical or treatment centers
Genetic counseling
Political action
Advocacy
Speakers
E-mail list
Chat room
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Website
Newsletter
Research updates
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals