Additional information, support and advice can be obtained from a variety of voluntary organisations as well as statutory bodies.
It is possible that there is little or no experience in service provision for people with prion disease in your local area. It will be important for national organisations with experience of this condition to be involved supporting families and professionals in order to facilitate services locally which meet each family's individual needs.
CJD Support Network
The CJD Support Network is the only UK charity providing emotional and practical support for all strains of CJD and for those who are at greater risk of CJD.” http://www.cjdsupport.net/
