UCL Queen Square Institute of Neurology


Huntington's Disease (Huntington's Chorea)

Medline NLM definition: an autosomal dominant disease characterized by chronic progressive chorea and mental deterioration terminating in dementia. The age of onset is variable but usually occurs in the fourth decade of life. Death usually follows within 15 years. (Dorland, 27th ed)

Huntington's Disease: information from the NHS website

Huntington's Disease: information from Patient UK website

Huntington's Disease: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Huntington's Disease: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Huntington's disease

Huntington's Disease Clinical Research - A source of the latest information about all clinical research in HD being carried out through the HD Multidisciplinary Clinic of the National Hospital for Neurology and Neurosurgery, Queen Square, London, and by researchers at UCL Institute of Neurology, and aims to bring together information about clinical research projects in Huntington's disease (HD) for patients, carriers of the HD gene family members and carers.

Support Groups

Huntington's Disease Association
The Huntington's Disease Association (HDA) is a registered charity which aims to provide a service to all those affected by Huntington’s disease in whatever way while raising awareness of the disease and the issues facing those affected by it.

Scottish Huntington's Association
The S.H.A. is the National Voluntary Organisation which offers information and support to families with HD, their friends and professionals, through a network of local S.H.A. groups and professional staff acting as Huntington's Advisors in various parts of Scotland.

Huntington’s Disease Society of America (HDSA) (US site)
Dedicated to finding a cure for Huntington’s Disease (HD) while providing support and services for those living with HD and their families. HDSA promotes and supports both clinical and basic HD research, aids families in coping with the multi-faceted problems presented by HD and educates the families, the public and health care professionals about Huntington’s Disease.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.