Printed materials available in:
English
German
French
Portuguese
Russian
Spanish
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Parents
Health care professionals
Researchers
The public
Teachers
Students
Legislators
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Website
Newsletter
Journal articles on condition
Video(s)/Movie(s)
Resource guide
Student materials
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals
Financial assistance for: