Creutzfeldt-Jakob disease (CJD) is a rare brain illness. It belongs to a group called prion diseases. Families often learn about it quickly and at a hard time. Clinicians may see only a few cases in a career. Researchers work in many countries and publish in many places. This site tries to bring what is known into one place, in words each reader can use.
Our mission is to make reliable information on CJD and prion diseases easy to reach for families, clinicians, researchers and partners, in support of prevention and treatment research.
Who is the site for?
It is written for three groups. Families and carers get plain explanations and next steps. Clinicians get practical reference material. Researchers get precise summaries with the methods and the limits of the evidence. All three draw on one shared collection of facts, called the Atlas, so a fact is the same wherever you meet it.
What does the site do?
It explains the diseases, the tests, the care that exists and the research under way. It lists its sources at the end of each page so you can read them yourself. It shows the date each page was last checked. Where sources disagree, it says so.
What does the site not do?
It does not give medical, legal or insurance advice. It does not read symptoms, test results, family history or risk. It does not tell anyone whether to have a genetic test. It says who to ask instead, such as your own doctor or a genetic counsellor. See the medical disclaimer.
It does not promise cures. It does not describe any treatment as working unless there are published data, and it reports the stage and limits of the evidence.
Is the site independent?
It is independent and non-commercial, and its founder funds it personally. It is free to read. It carries no advertising or sponsored content. The funding and independence page has more.
What about privacy?
The site does not ask you to create an account. How it handles any information about visitors is explained in the privacy notice.
Where can I read more?
The About page lists the pages on who is behind the site and how it works.