As part of the National CJD Surveillance Unit, the National CJD Care Team was set up in 2001 to monitor cases of Creutzfeldt-Jacob Disease throughout the United Kingdom.

When a patient is referred to us, once a diagnosis of probable or possible CJD is made, our coordinator makes direct contact with the family and offers the opportunity to meet and to assist with care planning.

Once contact is made, the coordinator can meet with the patient, family, and the professionals involved in care, on a regular basis, depending on need. We provide valuable expertise in nursing patients with CJD. We can anticipate and prevent some problems that may arise by offering skilled advice and education.