Printed materials available in:
Information provided for:
Affected individuals
Health care professionals
Families of affected individuals
Media
Students
Researchers
Range of services include:
Referrals to local chapter or group
Referrals to matching individuals/families
Political action
E-mail list
Telephone helpline
Genetic information
Speakers
Advocacy
Educational materials include:
Fact sheet(s)
Magazine
Pamphlet(s)
Booklet(s)
Newsletter
Bibliography
Conferences/workshops for:
Affected individuals and/or families
Researchers
Professionals