Useful Links

National CJD Research & Surveillance Unit
Bryan Matthews Building
Western General Hospital
Crewe Road
Edinburgh EH4 2XU
www.cjd.ed.ac.uk
0131 537 1980 telephone number for general enquiries and This email address is being protected from spambots. You need JavaScript enabled to view it. for Care Team enquiries/patient families

MRC Prion Unit

Queen Square House
Queen Square
London WC1N 3BG

Prion Unit enquiries:
Tel: 0203 448 4429
Skype: 0203 448 4429
Helpline: This email address is being protected from spambots. You need JavaScript enabled to view it.

National Prion Clinic:
Tel: 020 3448 4037
Skype: 020 3448 4038


Growth Hormone and CJD

For advice and support about c-hGH treatment and the risk of iCJD please contact:
Dr Peter Adlard, Senior Research Associate and Honorary Consultant Paediatrician
This email address is being protected from spambots. You need JavaScript enabled to view it.
To contact Dr Adlard at the Institute of Child Health directly call 020 7404 0536 (we respond to any messages rapidly).
For further information on the Long Term pituitary growth hormone study click here


UCL Institute of Child Health and Great Ormond Street Hospital.

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. These replace those produced in 2003 by the Association of Directors of 
Click here to view the 2018 Social workers guidelines


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: www.vcjdtrust.co.uk


The Brain & Spine Foundation

The Brain & Spine Foundation aims to improve the quality of life for people with neurological disorders and to reduce neurological disability by providing a national focus for research, education and information.
www.brainandspine.org.uk

CJD International Support Alliance

The UK CJD Support Network is a member of the CJD International Support Alliance.
The CJDISA website ican be visited by clicking here

Below is a list of colleagues who run CJD Support Groups in other countries. If you require information and support for a family member who live in one of the countries please contact the appropriate country who will be only too pleased to offer you support.

The groups differ in size and services available but they all have experience of CJD and the issues surrounding the disease.

  • CJD Foundation - United States contact Florence Kranitz website: www.cjdfoundation.org
  • CJD Support Group Network - Australia Contact Suzanne Solvyns website: www.cjdsupport.org.au
  • CJD Insight - USA for Genetic CJD Contact Deana M Simpson website: www.cjdinsight.com
  • CJD Support Network - Japan Contact Muneto Ueda This email address is being protected from spambots. You need JavaScript enabled to view it.
  • CJD Italy: Associazione Italiana Encefalopatie da Prioni (A.I.En.P) Italy Contact - Roberto Borgis This email address is being protected from spambots. You need JavaScript enabled to view it.
  • CJD France: Maladie du Crequzfeldt-Jakob par hormone de Croissance Contaminne (MCJ-HCC) France Contact Jean-Bernaud Mathieu
  • CJD Foundation - Israel - Contact Alice Anane - CJD Foundation - This email address is being protected from spambots. You need JavaScript enabled to view it. 
  • CJD Mexico: Contact Victor Sanchez - This email address is being protected from spambots. You need JavaScript enabled to view it.


Assisted Living Foundation
Assisted Living is a community organization that prioritizes helping those who are disabled and the elderly fully enjoy their healthy years and age gracefully. Our organization creates and publishes comprehensive, unbiased, free web-based resources. We have been featured on the Parkinson’s Foundation, US Department of Health and Human Services - Health Finder, Global Healthspan Policy Institute, and is referenced by many governmental agencies and organizations across the web. Click here to visit their website   

Assisted Living Foundation Guide
Based on a combination of feedback from families, our team of medical professionals created a comprehensive guide for people living with disabilities to learn more about assisted living options. This guide breaks down the care options that are available, financial support to help pay the care needed, and resources that are available from each state. You can see the entire guide along with some of its features here:
Click here to find out more