Printed materials available in:
Information provided for:
Affected individuals
Families of affected individuals
Care providers
Health care professionals
The public
Media
Range of services include:
Referrals to matching individuals/families
Professional counseling
Peer-to-peer counseling
Grief counseling
Medical referrals
Clinical or treatment centers
Speakers
Telephone helpline
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Website
Newsletter
Journal articles on condition
Research updates
Conferences/workshops for:
Financial assistance for:
Medical care
Organizational
Transportation