The Creutzfeldt-Jakob Disease Foundation

Abstract

The Creutzfeldt-Jakob Disease (CJD) Foundation was formed in 1993 in Miami, Florida by two women who each lost a loved one to this terrible disease. They were instrumental in designing the Foundation’s mission, which stresses a strong dedication to providing support and information to all affected families who turn to us for help. This mission continues to guide the Foundation’s work today.

Note

The CJD Foundation, while acting as a referral to the National Prion Disease Pathology Surveillance Center, is not a reporting agency. Each time we receive a call from a new family member reporting a loved one diagnosed with a suspected prion disease we add them to our records as a possible new case. When an autopsy is performed we follow up to determine the final diagnosis, when no autopsy is performed we attempt to ascertain as much information as possible prior to adding the patient to our statistics as a new case.