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Creutzfeldt-Jakob Disease (CJD) Resources

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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 occurrence of prion diseases in the United States. The center was established in 1997 at the Division of Neuropathology at Case Western Reserve University.

Creutzfeldt-Jakob Disease Foundation

The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. The CJD Foundation provides support to families by maintaining a 7-day 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

Scrapie