Range of services include:
Referrals to local chapter or group
Medical referrals
Clinical or treatment centers
Referrals for non-medical services
Advocacy
Speakers
Telephone helpline
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Website
Newsletter
Video(s)/Movie(s)
Lending library
Resource guide
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals