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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
crjakob@aol.com
http://www.cjdfoundation.org
Contact Helpline 1-800-659-1991

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
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
info@alz.org
http://www.alz.org
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
adear@alzheimers.org
http://www.alzheimers.org
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
nhpco_info@nhpco.org
http://www.nhpco.org
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
info@nfcacares.org
http://www.nfcacares.org
Tel: 301-942-6430 or 800-896-3650
Fax: 301-942-2302
 

Family Caregiver Alliance
690 Market Street
Suite 600
San Francisco, CA 94104
info@caregiver.org
http://www.caregiver.org
Tel: 415-434-3388 or 800-445-8106
Fax: 415-434-3508
 

Well Spouse Foundation
63 West Main Street Suite H
Freehold, NJ 07728
info@wellspouse.org
http://www.wellspouse.org
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
inquiry@cdc.gov
http://www.cdc.gov
Tel: 800-311-3435
404-639-3311
404-639-3543
 


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
lending@nal.usda.gov
http://www.nal.usda.gov
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
http://www.fda.gov
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
Switzerland, info@who.int
http://www.who.int
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
www.ninds.nih.gov

 

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