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Useful links

We are proud to work collaboratively with, and signpost to, other organisations in the UK and beyond who are able to offer information and support to those in our network.

On this page you will find information and links to other organisations offering support, information and awareness raising for CJD and prion disease in the UK, bereavement support and resources, and international information, care and support. 

National CJD Research & Surveillance Unit (Edinburgh)

General enquiries: 0131 537 1980
Care team enquiries/patient families: [email protected] 

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National Prion Clinic, MRC Prion Unit UCL (London)

Helpline/enquiries: 0207 679 5142
Email: [email protected]

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Guidelines for Social Workers

New CJD guidelines for Social Workers have been published in June 2018. Click here to view the 2018 Social worker’s guidelines.

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vCJD Trust

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.

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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 the availability of in-person local support in different areas of the UK, can be found on their website. Helpline: 0808 808 1677

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Child Bereavement UK

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. They offer free, confidential bereavement support by telephone, video or instant messenger, wherever you live in the UK. Telephone: 0800 02 888 40.

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Rare Minds Wellbeing Hub

Rareminds was established in 2020. Their aim is to raise awareness of the emotional and psychological aspects of living with a rare disease, and provide affordable solutions for charities wanting to provide counselling and emotional wellbeing resources for their unique rare disease community.

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Department of Health

For CJD information visit and in its search engine enter CJD which will take you to CJD guidance, policy and much more.

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The Cure CJD Campaign

The Cure CJD Campaign was set up by a group of people who have been impacted by CJD. Its 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.

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WAY (Widowed and Young)

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.

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Way Up

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 50s and 60s. To join and find out more, visit their website.

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Samaritans works to make sure there’s always someone there for anyone who needs someone. Whatever you’re going through, a Samaritan will face it with you. The have a helpline which is available 24 hours a day, 365 days a year on 116 123, or visit their website to learn of other ways to contact them.

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CJD International Support Alliance

The UK CJD Support Network is a member of the CJD International Support Alliance. The CJDISA membership currently 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.

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