Printed materials available in:
Spanish
English
French
German
Information provided for:
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Teachers
Media
Students
Researchers
Other
Range of services include:
Referrals to research studies
Referrals to matching individuals/families
Peer support
Other
Telephone helpline
Chat room
Other
Educational materials include:
Fact sheet(s)
Journal articles on condition
Research updates
Newsletter
Website
Other
Conferences/workshops for:
Affected individuals and/or families
Public
Professionals
Other
Financial assistance for: