Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Families of affected individuals
The public
Teachers
Researchers
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Peer support
Grief counseling
Non-medical services
Services for the hearing impaired
Awareness programs
E-mail list
Telephone helpline
Genetic information
Speakers
Pen pal program
Services for the visually impaired
Advocacy
Educational materials include:
Fact sheet(s)
Video(s)/Movie(s)
Journal articles on condition
Pamphlet(s)
Booklet(s)
Research updates
Newsletter
Website
Conferences/workshops for:
Affected individuals and/or families
Public
Researchers
Professionals