Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Health care professionals
Researchers
The public
Media
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Medical referrals
Referrals for non-medical services
Advocacy
Speakers
Telephone helpline
E-mail list
Educational materials include:
Pamphlet(s)
Website
Newsletter
Journal articles on condition
Video(s)/Movie(s)
CD Roms
Resource guide
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals