Abstract

Creutzfeldt-Jakob disease (CJD) is a rare, degenerative and fatal brain disease that appears to be caused by an abnormal form of a protein called a prion. Due to the lack of an effective treatment for CJD, support for patients and family members is crucial. Appropriate education of the healthcare community on this rare disease and provision of palliative care are critically needed. The CJD Foundation and CJD Insight were formed to provide services to patients and families affected by prion diseases.

Keywords: Prion disease, creutzfeldt-Jakob Disease, support, caregiver, treatment, non-pharmacological, creutzfeldt jakob disease foundation, CJD insight