If you have just heard the words Creutzfeldt-Jakob disease for the first time, you do not have to read everything at once. Pick the one question that is pressing today.
Where should I start?
Many people come here after a relative has become ill very quickly, or after a doctor has mentioned a test. Start here sets out the first few days in order. If you want the illness itself explained first, go to the diseases. If a doctor has talked about a gene that runs in a family, genetics explains what that means and who to ask about it.
What are prion diseases?
Everyone has a protein in the body called prion protein. In prion diseases, that protein folds into the wrong shape and gathers in the brain, which damages it. Creutzfeldt-Jakob disease, usually shortened to CJD, is the best known of them. These illnesses are rare. The NHS and the CDC both describe sporadic CJD, the most common form, as affecting about one or two people in a million each year.
Most cases happen for reasons that are not understood. Around 10 to 15 percent are linked to an inherited change in the prion protein gene, and a small number came from medical treatments given in the past.
What help is there while someone is ill?
There is no treatment that stops a prion disease, and that is a hard thing to be told. Care still makes a real difference to comfort, dignity and the time a family has together. A 2026 set of UK recommendations written by prion specialists, palliative care doctors, nurses, a general practitioner, a psychologist and a person with lived experience advises bringing palliative care in early, ideally from diagnosis, and names the team who usually help: the GP, occupational therapy, physiotherapy, speech and language therapy, district nurses, social work and specialist prion services.
Care and support covers that ground step by step, from the first weeks through daily care at home. If you are a clinician or a counsellor reading alongside a family, there are pages written for you at for clinicians and for counsellors.
Can my family catch it?
The 2026 recommendations state plainly that there is no evidence CJD passes from person to person through ordinary social and clinical contact. Normal precautions apply in hospital, and extra ones only for certain procedures. Hugging, eating together and caring for someone at home are safe.
Who can I talk to?
Country support groups for families exist in many places, listed by the CJD International Support Alliance, among them the CJD Foundation in the United States, the CJD Support Network in the UK, the CJD Support Group Network in Australia and CJD Care India. Support groups by country has the list with contact details.
Nothing written here can tell you what is happening to one particular person. Questions about symptoms, tests or inheritance belong with the treating neurologist, and questions about a gene in the family belong with a genetic counsellor.
The Atlas holds the organisations, tests and research behind these pages, search looks across all of it, and updates lists what changed recently.
Explore
- Care and supportCare and support in CJD and other prion diseases: who is on the team, what helps at home, and where families can turn for practical and emotional help.
- For cliniciansA starting point for clinicians meeting a suspected prion disease case: who to call, what to send, and which pages cover each step.
- For counsellorsA starting point for genetic counsellors working with prion disease families: what the published frameworks recommend, and where the evidence is thin.
- Help by countryWhere to find help for CJD and other prion diseases in your own country, and how diagnosis, testing and support are organised in each.
- Diagnosis and testsHow prion disease is diagnosed, what each test is for, and the questions worth asking your doctor, explained in plain words.
- Prion diseasesThe prion diseases that affect people, how they differ from one another, and plain pages on each one.
- Genetics and family riskWhat it means when a prion disease runs in a family, who to talk to first, and the choices open to relatives. Plain answers, no pressure either way.
- How clinical trials workHow clinical trials work in plain words: phases, placebo, consent, who can join, and how to ask about a trial for CJD or prion disease.
- Exposure and safetyExposure and safety in CJD and prion disease: everyday contact, caring at home, blood, surgery, donation, food and deer, explained calmly with sources.
- Start hereStart here if CJD or prion disease has just entered your life. Pick the situation that fits and get the next three steps, with links and who to call.
- Treatments being researchedNo treatment has yet been proven to slow or stop CJD. What care can do now, what researchers are testing, and who to ask about trials.
- Taking part from outside the USWhat families outside the United States can and cannot join, how to check a trial's countries, and who to ask about taking part from abroad.
Sources for this page
- NHS: Creutzfeldt-Jakob disease (CJD)
- CDC: About Classic Creutzfeldt-Jakob Disease
- Ng M and others. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders. Age and Ageing 2026 (PMC full text)
- CJD International Support Alliance: global directory of patient associations
- MedlinePlus Genetics: Prion disease