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MRC Prion Unit
From fundamental research to prevention and cure
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Counselling and Support

The rapid progression and unexpected nature of prion disease can be difficult for patients and families to come to terms with.  At the National Prion Clinic (NPC) specialist nurses are available to provide information and ongoing support.  The nurses can arrange to visit you at home, an alternative convenient location, or can be contacted by telephone or by e-mail.

There are four nurses at the NPC. We aim to make available around a day each per week specifically for counselling and support.   

Genetic Counselling

If you are concerned about inherited prion disease, it may be beneficial to see a genetic counsellor who will work in a Clinical Genetics team at a local NHS hospital.  Finding out whether you have a gene mutation which leads to prion disease is a complex and personal decision. Genetic counselling offers an opportunity for individuals who are at risk of inherited prion disease to find out about the possible implications of a positive or negative test result. Follow up support and advice may also be available from these teams

The British society of Human genetics provides information about genetic counselling for patients and families www.bsgm.org.uk

The Association of Genetic Nurses and Counsellors Code of Ethics can be found at www.agnc.org.uk

 

Inherited Prion Disease Support Network
Inherited Prion Disease Support Network

The Inherited Prion Disease Support Network was founded by two cousins to develop peer support for others who have been affected by Inherited Prion Disease (IPD).

The online community offers a place to share information and talk to others in the same situation. Help is provided through shared experience and peer support with others who understand.

Please visit the Inherited Prion Disease Support website at http://www.inheritedpriondiseasesupport.org/ for more information.

MRC Prion News