Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Legislators
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Financial referrals
Non-medical services
Awareness programs
Political action
Telephone helpline
Training
Advocacy
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Newsletter
Website
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals