What is the All Wales Service for Huntington’s disease?

The All Wales Service for Huntington’s disease was initially set up by Professor Sir Peter Harper and is provided through the Institute of Medical Genetics, University Hospital of Wales, Cardiff.
Its aims are:

(i) to manage and support individuals who are either showing symptoms, are known to carry the gene for HD but are asymptomatic, and also individuals who are at risk of developing the disease due to positive family history.
(ii) to coordinate the service needs of Huntington’s disease families, and
(iii) to facilitate research, with the original emphasis being epidemiological research.

It has gained an international reputation for this work and has successfully combined genetic counselling for those at risk of the disease with the assessment and management of affected individuals, and research. The service in Cardiff is now staffed by a multi-disciplinary team comprising input from Genetics, Neurology, Psychiatry and Psychology and serves the South of Wales and families from elsewhere in Wales and the South West of England who do not have access to a similar service. The multidisciplinary nature of the service improves the provision of help and advice so that all the issues Huntington’s disease families face from concern about possible risk through to management of individuals with advanced Huntington’s disease can be addressed. There is a proposal to hold a satellite clinic in Swansea in the near future. The HD service in North Wales carries out genetic testing for individuals at risk of the disease and affected patients are referred to centres in Manchester and Liverpool.

For more advice on coping with Huntington’s disease, please refer to the HDA website where you can download information leaflets.