Printed materials available in:
Information provided for:
Range of services include:
Medical referrals
Other
Telephone helpline
Genetic information
Speakers
Other
Educational materials include:
Fact sheet(s)
Pamphlet(s)
Booklet(s)
Website
Other
Conferences/workshops for:
Financial assistance for:
Research activities include:
Registry of affected individuals
Blood and tissue banking
Linking researchers and families
Initiating and conducting research