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Acknowledgement and Disclaimer
An overview of the web site with links

7 Sep 16

INFORMATION

Living with Huntington's Disease is the same in any country. The Canadian pages have a very useful description of the complexity of living in a Huntington's family and added to that is the varying support, information and services that are available locally in New Zealand.

The most important need for newly diagnosed families is to be put in touch with the local Huntington's Disease Association, which is the only source of support and information, to find out about the services available.

Those "at risk" who wish to go through the Predictive Test program must comply with the local protocol to ensure that the needed information and support is available, which most agree enables families to be positive and make the most of life at all times.

To find out how families were coping with receiving the results of predictive tests, the Association in Wellington arranged for Alison Gray, interviewer and editor of "Genes & Generations, Living With Huntington's Disease" to research family responses to predictive testing among those who had been tested by the Central Regional Genetics Service.

Those coping with behavioural problems arising from Huntington’s Disease will appreciate the advice given by Professor Pete Ellis, of the Department of Psychological Medicine at the Wellington School of Medicine, to the Wellington HD Conference, September 1997.



Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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