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 research studies
Referrals to matching individuals/families
Peer-to-peer counseling
Medical referrals
Genetic information
Referrals for non-medical services
Non-medical services
Financial referrals
Advocacy
Speakers
Telephone helpline
Air transportation
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Newsletter
Video(s)/Movie(s)
Resource guide
Financial assistance for: