Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Health care professionals
Researchers
The public
Teachers
Students
Media
Legislators
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Peer-to-peer counseling
Medical referrals
Genetic information
Referrals for non-medical services
Financial referrals
Political action
Advocacy
Training
Speakers
Pen pal program
Telephone helpline
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Newsletter
Journal articles on condition
Research updates
Video(s)/Movie(s)
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Financial assistance for:
Medical care
Transportation