Welcome to the CJD Support Network website

The CJD Support Network is the only UK charity providing emotional and practical support for all strains of CJD and for those who are at greater risk of CJD.

In our website you will find how to contact us for information and support, learn more about the four types of CJD, see what we do as a support network, access our factsheets and newsletters and see how you can help the work of the network, plus much more...

Phone Icon


Our helpline is available for information and support

Phone Icon


Send us an email via our website

Phone Icon


Read our fact sheets to find out more about CJD

Phone Icon


Read our latest newsletter for information and personal CJD stories


We have been asked by Ionis Pharmaceuticals to share this survey below in relation to people affected by prion disease, including at-risk individuals, caregivers, former caregivers and current patients. This is to provide their perspectives on and experiences with genetic testing through the survey they have created. * Please note that the CJD Support Network has no direct involvement with this company nor holds a particular view on this survey*  Link to survey below:


1 in 5,000

is the lifetime risk of CJD

This is the statistical probability of someone in the general population getting CJD

4 types

there are 4 strains of CJD
Click here to find out more

20+ years

is how long we have been offering information and support