Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Health care professionals
Researchers
The public
Students
Media
Range of services include:
Referrals to research studies
Referrals to matching individuals/families
Peer-to-peer counseling
Medical referrals
Clinical or treatment centers
Financial referrals
Political action
Advocacy
Training
Speakers
Telephone helpline
E-mail list
Chat room
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Magazine
Website
Newsletter
Journal
Video(s)/Movie(s)
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Research Management:
Linking researchers and families
Awarding research grants
Major research collaborators :