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Creutzfeldt-Jakob disease
Is there support?
Bryan Matthews Building
Western General Hospital
Crewe Road
Edinburgh
EH4 2XU
Tel: 0131 537 2128
Web: http://www.cjd.ed.ac.uk
The National CJD Surveillance Unit covering the UK is based in Edinburgh and can answer general queries on CJD.
Group details last confirmed July 2008.
PO Box 346
Market Drayton
TF9 4WN
Tel/Fax: 01630 673993
Tel: 01630 673973 CJD Helpline
e-mail: support@cjdsupport.net
Web: http://www.cjdsupport.net
The Network is a National Registered Charity No. 1097173. It offers support and advice on all forms of CJD and links families where possible. It also offers support to those who have been told they have an increased risk of CJD and to people who have been told that they are at a higher risk of CJD through blood transfusions or surgical instruments. It publishes a newsletter twice yearly and has information available, details on request. The Network has approximately 400 members.
Group details last confirmed March 2008.
c/o Contact a Family
209-211 City Road
London
EC1V 1JN
Tel: 0808 808 3555 Helpline
Tel: 020 7608 8700
Fax: 020 7608 8701
e-mail: info@cafamily.org.uk
Web: http://www.cafamily.org.uk
The Families of Human BSE is a group established in 1997, all of whom have personal experience of the tragedy of variant CJD. They offer support to families of victims through family days, memorial events, a newsletter and an opportunity to talk to others. They had a formative role in gaining official recognition for the disease and believe their experience may be useful for concerned individuals.
Group details last updated February 2008.
Box 98
National Hospital for Neurology and Neurosurgery
Queen Square
London
WC1N 3BG
Tel: 020 7405 0755
Fax: 020 7061 9889
e-mail: help.prion@uclh.org
Web: http://www.nationalprionclinic.org
The National Prion Clinic is a specialist service of the National Hospital for Neurology and Neurosurgery. Assessment, diagnosis, information, advice and support are available for patients, families, and health care professionals. A referral is not necessary for families or professionals to contact the clinic to discuss any CJD or Prion related issues.
Group details last confirmed October 2007.
Inheritance patterns and prenatal diagnosis
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