Useful Links

 

In this section, you will find information and links to other organisations offering:

  • UK based information, care, and support for CJD
  • UK based bereavement support 
  • International information, care, and support for CJD

For help identifying and accessing local support, we would advise speaking with your GP or contacting us on This email address is being protected from spambots. You need JavaScript enabled to view it. / 0800 774 7317 (lines open 8am-6pm, Tuesday and Friday).

 

We also have a YouTube channel where you can find some videos regarding topics such as the diagnostic process, grief & loss and giving care. Access our Youtube channel here.

 

 

UK based information, care, and support


National CJD Research & Surveillance Unit (Edinburgh)
www.cjd.ed.ac.uk
Bryan Matthews Building
Western General Hospital
Crewe Road
Edinburgh 
EH4 2XU

General enquiries: 0131 537 1980 
Care team enquiries/patient families: This email address is being protected from spambots. You need JavaScript enabled to view it. 

National Prion Clinic, MRC Prion Unit UCL (London)
www.ucl.ac.uk/national-prion-clinic/
Courtauld Building
33 Cleveland Street
London
W1W 7FF 

Helpline/enquiries: 0207 679 5142 
Email: This email address is being protected from spambots. You need JavaScript enabled to view it. 

vCJD Trust
www.vcjdtrust.co.uk
In October 2000, the Secretary of state announced that the Government would pay compensation to the victims of vCJD and their families. Information on the compensation scheme and how to claim is available on the vCJD Trust website.

Department of Health
For CJD information visit www.doh.gov.uk and in its search engine enter CJD which will take you to CJD guidance, policy and much more.

Guidelines for Social Workers
New CJD guidelines for Social Workers have been published in June 2018. Click here to view the 2018 Social workers guidelines. 

 

UK based bereavement support

Cruse
www.cruse.org.uk
Cruse is the UK’s leading bereavement charity. They offer support through their website, national helpline, live chat, group, zoom, telephone or one-to-one in person support. Information on the support they offer, including availability of in person local support in different areas of the UK can be found on their website. Helpline: 0808 808 1677

 WAY (Widowed and Young)
www.widowedandyoung.org.uk 
WAY is the only national charity in the UK for people aged 50 or under when their partner died (regardless of marital status, gender or sexual orientation). It’s a peer-to-peer support group operating with a network of volunteers who have been bereaved at a young age themselves. To find out more, visit their website. 

Way Up
www.way-up.co.uk 
Way Up is an active, online self-help group - whose members also arrange in person meet ups - aimed at providing mutual support to those who have been widowed primarily, but not exclusively,  in their 50’s and 60’s. To join and find out more, visit their website. 

Child Bereavement UK
www.childbereavementuk.org
Child Bereavement UK helps children, parents and families to rebuild their lives when a child grieves or when a child dies. They support children and young people up to the age of 25 who are facing bereavement, and anyone affected by the death of a child of any age. They offer free, confidential bereavement support by telephone, video or instant messenger, wherever you live in the UK. Visit their website to find out more, or contact them on: 0800 02 888 40. Child Bereavement UK offer helpful resources on talking to children about death and dying, click here to access this area of their website. Further useful information on talking to children about illness and dying can be found on the Marie Curie website here.

 

International information, care, and support

CJD International Support Alliance
www.cjdisa.com
The UK CJD Support Network is a member of the CJD International Support Alliance. The CJDISA membership current consists of 14 support organisations covering 13 countries. To find information on other Patient Associations globally, you can visit the CJDISA website by clicking here. If you require information and support for a family member who live in one of the countries listed, please contact the appropriate country who will be only too pleased to offer you support.

If you know of any other organisations whose details may be usefully listed here, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. 

 

 

UK based CJD related campaigns

The Cure CJD Campaign was set up by a group of people who have been impacted by CJD. It's purpose is to raise funds and to support the work of the Medical Research Council Prion Unit at University College London to develop a treatment or cure for CJD, and to increase awareness and understanding of the disease.