Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. Typically, onset of symptoms occurs at about age 60. There are three major categories of CJD: sporadic CJD, hereditary CJD, and acquired CJD. There is currently no single diagnostic test for CJD. The first concern is to rule out treatable forms of dementia such as encephalitis or chronic meningitis. The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy. In a brain biopsy, a neurosurgeon removes a small piece of tissue from the patient's brain so that it can be examined by a neurologist. Because a correct diagnosis of CJD does not help the patient, a brain biopsy is discouraged unless it is need to rule out a treatable disorder. While CJD can be transmitted to other people, the risk of this happening is extremely small.
Alzheimer's Association 225 North Michigan Avenue 17th Floor Chicago, IL 60601-7633 info@alz.org http://www.alz.org Tel: 312-335-8700 1-800-272-3900 (24-hour helpline) TDD: 312-335-5886 Fax: 866.699.1246 |
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 |
Creutzfeldt-Jakob Disease (CJD) Foundation Inc. P.O. Box 5312 Akron, OH 44334 help@cjdfoundation.org http://www.cjdfoundation.org Tel: 800-659-1991 Fax: 330-668-2474 |
National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
CJD Aware! 2527 South Carrollton Ave. New Orleans, LA 70118-3013 cjdaware@iwon.com; info@cjdaware.com http://www.cjdaware.com Tel: 504-861-4627 |
Alzheimer's Disease Education
and Referral Center (ADEAR) P.O. Box 8250 Silver Spring, MD 20907-8250 adear@nia.nih.gov http://www.alzheimers.nia.nih.gov Tel: 301-495-3311 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 Tel: 703-837-1500 Helpline: 800-658-8898 Fax: 703-837-1233 |
National Family Caregivers Association 10400 Connecticut Avenue Suite 500 Kensington, MD 20895-3944 info@thefamilycaregiver.org http://www.thefamilycaregiver.org Tel: 800-896-3650 Fax: 301-942-2302 |
Family Caregiver Alliance/
National Center on Caregiving 180 Montgomery Street Suite 1100 San Francisco, CA 94104 info@caregiver.org http://www.caregiver.org Tel: 415-434-3388 800-445-8106 Fax: 415-434-3508 |
Well Spouse Association 63 West Main Street Suite H Freehold, NJ 07728 info@wellspouse.org http://www.wellspouse.org Tel: 800-838-0879 732-577-8899 Fax: 732-577-8644 |
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 |
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) |
World Health Organization Avenue Appia 20 1211 Geneva 27 Switzerland, info@who.int http://www.who.int Tel: (+ 41 22) 791 21 11 Fax: (+ 41 22) 791 3111 |
Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
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Last updated December 09, 2008