Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Parents
Health care professionals
Researchers
The public
Teachers
Students
Media
Range of services include:
Referrals to research studies
Referrals to matching individuals/families
Medical referrals
Genetic testing
Genetic information
Referrals for non-medical services
Awareness Programs
E-mail list
Chat room
Air transportation
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Website
Newsletter
Journal articles on condition
Bibliography
Research updates
CD Roms
Resource guide
Membership directory
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Cohort Development:
Registry of affected individuals
Blood and Tissue Banking
Disease Characterization:
Epidemiological studies
Phenotype/genotype correlation studies
Organization has access to patient medical records
Research Management:
Linking researchers and families
Participant recruitment
Organization has intellectual property (IP)
Providing information about clinical trials
