Printed materials available in:
Chinese
English
German
French
Spanish
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Health care professionals
Researchers
The public
Teachers
Students
Legislators
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Professional counseling
Peer-to-peer counseling
Medical referrals
Clinical or treatment centers
Genetic testing
Genetic information
Referrals for non-medical services
Non-medical services
Political action
Advocacy
Training
Speakers
Telephone helpline
Services for the visually impaired
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Magazine
Website
Newsletter
Journal articles on condition
Bibliography
Research updates
Lending library
Resource guide
Student materials
Conferences/workshops for:
Affected individuals and/or families
Public
Professionals
Financial assistance for: