Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Parents
Fathers
Mothers
Siblings
Grandparents
Health care professionals
The public
Range of services include:
Referrals to local chapter or group
Referrals to matching individuals/families
Peer-to-peer counseling
Medical referrals
Non-medical services
Awareness Programs
Advocacy
Speakers
Chat room
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Journal articles on condition
Resource guide
Conferences/workshops for:
Affected individuals and/or families
Professionals