Juvenile HD project

The HDA received a grant from the Department of Health to find out more about JHD.

This grant was used to fund a JHD project during 2001 to the end of 2005.

Phase 1 of this project was to develop a register of people with Juvenile Huntington’s disease. This register allows us to find out more about the people affected with JHD and to facilitate future research.

Phase 2 of this project was to carry out interviews with the parents/guardians of young people with JHD to find out what their needs are and the issues they are facing. This information has enabled us to provide better services for families and to support families better.

If you are interested in finding out more about the results of the project, please contact Helen Santini, Specialist JHD Adviser, Tel: 01279 507 656 or email at helen.santini@hda.org.uk

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