Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Teachers
Legislators
Media
Students
Researchers
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Peer support
Grief counseling
Financial referrals
Non-medical services
Peer-to-peer counseling
Awareness programs
Political action
E-mail list
Telephone helpline
Clinical or treatment centers
Speakers
Pen pal program
Training
Advocacy
Educational materials include:
Fact sheet(s)
Membership directory
Pamphlet(s)
Booklet(s)
Newsletter
Resource guide
Website
Student materials
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals