Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Families of affected individuals
Other
Range of services include:
Referrals to local chapter or group
Referrals to research studies
Referrals to matching individuals/families
Professional counseling
Grief counseling
Other
Peer-to-peer counseling
Advocacy
Other
Educational materials include:
Fact sheet(s)
Video(s)/Movie(s)
Journal articles on condition
Lending library
Research updates
Newsletter
Bibliography
Website
Other
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals
Other
Financial assistance for: