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Support, information and services for

Welcome to Huntington’s NSW ACT

Huntington’s NSW ACT was established in 1975 to develop support and educational programs for people affected by Huntington’s disease (HD) in New South Wales and the Australian Capital Territory. We help families understand and cope with Huntington’s disease, and give families affected by HD a strong united voice.

What is Huntington’s Disease?

Huntington’s disease (HD) is a genetic neurodegenerative condition that affects the brain and nervous system. It can cause three types of symptoms including:

  • Involuntary movements, which can lead to problems with balance, walking and functioning;
  • Cognitive (or ‘Thinking’) symptoms, which can reduce a person’s memory impacting their ability to plan and multi-task; as well as impacting their ability to reason;
  • Behavioural symptoms, which can be seen as personality changes and/or actions that are out of character.

Each person with HD is affected differently. 

HD symptoms commonly appear in a person between the ages of 35 and 50, but it’s possible for them to appear at any age. There is currently no cure.

For more information about Huntington’s disease, please see our Resource Library and Research pages.