Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Care providers
Families of affected individuals
The public
Media
Researchers
Other
Range of services include:
Referrals to research studies
Peer support
Other
Genetic testing
E-mail list
Telephone helpline
Genetic information
Clinical or treatment centers
Advocacy
Other
Educational materials include:
Fact sheet(s)
Slides
Journal articles on condition
Research updates
Newsletter
Resource guide
Website
Other
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals
Other
Financial assistance for: