Printed materials available in:
Information provided for:
Affected individuals
Care providers
Health care professionals
Researchers
The public
Teachers
Range of services include:
Advocacy
Training
Speakers
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Website
Newsletter
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals
Research Management:
Providing information about clinical trials
Major research collaborators :