Information provided for:
Affected individuals
Families of affected individuals
Care providers
Parents
Fathers
Mothers
Siblings
Grandparents
Health care professionals
Researchers
The public
Teachers
Students
Media
Legislators
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Peer Support
Peer-to-peer counseling
Genetic information
Advocacy
E-mail list
Educational materials include:
Conferences/workshops for:
Affected individuals and/or families