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Where Can I Get Help?

The following organizations can provide information and support for people and families affected by Creutzfeldt-Jakob disease:

Creutzfeldt-Jakob (CJD) Foundation Inc.
P.O. Box 5312
Akron, OH 44334
Contact Helpline 1-800-659-1991

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
Voice Mail 800-999-NORD (6673)
Tel: 203-744-0100
Fax: 203-798-2291

 Alzheimer's Association
225 North Michigan Avenue
17th Floor
Chicago, IL 60601-7633
Tel: 312-335-8700 or 800-272-3900
Fax: 312-335-1110

Alzheimer's Disease Education and Referral Center (ADEAR)
P.O. Box 8250
Silver Spring, MD 20907-8250
Tel: 301-495-3311 or 800-438-4380
Fax: 301-495-3334

 National Hospice and Palliative Care Organization /Natl. Hospice Foundation
1700 Diagonal Road
Suite 625
Alexandria, VA 22314
Helpline: 800-658-8898
Tel: 703-837-1500
Fax: 703-837-1233

National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD 20895-3944
Tel: 301-942-6430 or 800-896-3650
Fax: 301-942-2302

Family Caregiver Alliance
690 Market Street
Suite 600
San Francisco, CA 94104
Tel: 415-434-3388 or 800-445-8106
Fax: 415-434-3508

Well Spouse Foundation
63 West Main Street Suite H
Freehold, NJ 07728
Tel: 800-838-0879 or 732-577-8899
Fax: 732-577-8644

Centers for Disease Control and Prevention (CDCP)
U.S. Department of Health and Human Services
1600 Clifton Road, N.E.
Atlanta, GA 30333
Tel: 800-311-3435

If you are interested in learning more about steps taken to ensure the safety of beef and other agricultural products in the United States, contact:

Department of Agriculture (USDA)
National Agricultural Library
10301 Baltimore Avenue
Beltsville, MD 20705-2351
Tel: 301-504-5755/301-504-6856 (TDD/TTY)
Fax: 301-504-6927

For information on the safety of medical products and procedures, contact:

Food and Drug Administration (FDA)
U.S. Department of Health and Human Services
5600 Fishers Lane, CDER-HFD-240
Rockville, MD 20857
Tel: 301-827-4573 888-INFO-FDA (463-6332)

Health care workers who wish to receive information on special surgical and disinfection procedures should see the NINDS Fact Sheet for Healthcare Workers and Morticians or contact the World Health Organization at:

World Health Organization
Avenue Appia 20
1211 Geneva 27
Tel: (+ 41 22) 791 2111
Fax: (+ 41 22) 791 3111

For information on other neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at: BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424


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