Huntington Disease (HD) is a genetic brain disorder. Each child of an affected parent has a 50% chance of inheriting the defective gene. It progressively affects the body, mind and emotions eventually leading to incapacitation and death about 15-25 years after onset. It mostly affects adults, usually appearing between the ages of 30 and 50. In very rare cases, people under the age of 20 can develop juvenile Huntington Disease. A small number of people will also develop HD in the later stages of life. In Australia, considered as a whole, HD will affect 6 – 7 people in every 100,000.
Services are provided to Australian families through state associations, each of which is independently incorporated and managed. The Australian Huntington’s Disease Association (National) is an unincorporated body, the objectives of which are:
- to promote a national profile for Huntington’s Disease Associations.
- to provide a forum for planning by state associations.
- to advocate in areas of national priority.
- to develop national policies and standards.
- to promote uniformity of purpose amongst state associations.
- to benchmark best practice in areas of national priority.
- to maintain relations with like-minded organisations world-wide.
- to disseminate information nationally and internationally.