Creutzfeldt-Jakob Disease (CJD) Resources

CJD Resources Handout (PDF)

National Prion Disease Pathology Surveillance Center

Supported by CDC and sponsored by the American Association of Neuropathologists, NPDPSC was established to help monitor the incidence of human prion disease in the United States as well as decipher which cases may be due to an acquired etiology and monitor for novel prion diseases. The center was established in 1997 in the Division of Neuropathology at Case Western Reserve University in Cleveland, Ohio.

Creutzfeldt-Jakob Disease Foundation

The mission of the Creutzfeldt-Jakob Disease Foundation (CJD Foundation) is to support families affected by Prion Disease, raise awareness, and support medical education and research. The CJD Foundation supports families with a Helpline, referrals, support groups, and teleconference speaker series. They have an annual family conference in Washington, DC and have family workshops around the country. They provide education and information for families, caregivers, medical professionals, and funeral professionals. They have a research grant program, disseminate research findings, and collaborate with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations. They also actively advocate for the development of a response through public policy. 

Website Resources

Centers for Disease Control and Prevention (CDC)

World Health Organization (WHO)

Genetic Prion Disease

Bovine Spongiform Encephalopathy (BSE or “mad cow disease”)

Chronic Wasting Disease (CWD)

Information for Hunters


Mailing Address

Disease Surveillance and Epidemiology Section
Mail Code: 3082
P.O. Box 149347
Austin , TX 78714-9347
United States

Physical Address

Disease Surveillance and Epidemiology Section
Moreton Building, Suite M-631
1100 West 49th Street
Austin , TX 78756-3199
United States