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Juvenile Huntington's Disease Project

March 2002

In the last edition of the newsletter it was announced that the Association had obtained a grant from the Department of Health to fund a three year project concerned with Juvenile Huntington's disease (JHD).

The aim of this initiative is to look at the needs of children and families affected by this form of the illness. A new National Care Advisory post for Juvenile Huntington's disease has been established and Alison Clarke was recently appointed to the role of co-ordinating and progressing the project.

Initially Alisons role will be concerned with gathering information from families affected by JHD and the various professionals involved in their care. As JHD is relatively rare, few health professionals will have encountered the condition previously and they are unlikely to meet more than one or two affected families throughout their career.

One of the main aims of the project is to draw together the knowledge and experience of families, carers and a wide range of professionals throughout the country and to establish a core, centralised and readily accessible body of information and expertise in relation to JHD.

One of the first steps in achieving this goal is to more accurately determine how many individuals and families are affected by JHD nationally, as this information has not been systematically collected before. The desired outcome of the project is the establishment of a better understanding of JHD and how it impacts on affected young people and their families and to ensure that they receive the highest quality of care and support.

Anyone who would like more information about the project can contact Alison by writing to her via Head Office or by telephoning her on 0151 228 9834.

Note: This was posted on the HD UK website. Right now I don't know the contact in the United States.