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Creutzfeldt-Jakob Disease Foundation and Other Resources 

About CJD

Classic CJD is a human prion disease. It is a neurodegenerative disorder with characteristic clinical and diagnostic features. This disease is rapidly progressive and always fatal. Infection with this disease leads to death usually within 1 year of onset of illness.


Occurrence and Transmission

Classic CJD has been recognized since the early 1920s. The most common form of classic CJD is believed to occur sporadically, caused by the spontaneous transformation of normal prion proteins into abnormal prions. This sporadic disease occurs worldwide, including the United States, at a rate of approximately one case per 1 million population per year, although rates of up to two cases per million are not unusual. The risk of CJD increases with age, and in persons aged over 50 years of age, the annual rate is approximately 3.4 cases per million. In the most recent five year period, the United States has reported between 279 and 352 cases a year.


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Whereas the majority of cases of CJD (about 85%) occur as sporadic disease, a smaller proportion of patients (5-15%) develop CJD because of inherited mutations of the prion protein gene. These inherited forms include Gerstmann-Straussler-Scheinker syndrome and fatal familial insomnia.

CJD Foundation

The Creutzfeldt-Jakob Disease Foundation Website contains information compiled with the needs of CJD patients and their families in mind. The CJD Foundation consists of members who want to support you through this experience.  Learn more


A HelpLine is available through the CJD Foundation. Calls are answered during work hours Monday-Friday 9:00 am-5:00 pm Eastern Time. Calls concerning patient issues that are received after business hours are returned in the evenings and on weekends.  Please call 1.800.659.1991 and ask for Florence or Lori.


Other Resources

Mayo Clinic


National Prion Disease Pathology Surveillance Center

Content source: Centers for Disease Control and PreventionDate: November 15, 2012

National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)

Division of High-Consequence Pathogens and Pathology (DHCPP)

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