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What is Huntington’s disease (HD)?

Huntington’s disease (HD) is an inherited, relentlessly degenerative brain disorder with physical, cognitive and emotional symptoms. It affects both males and females and symptoms usually begin to appear between 30 and 50 years of age. Less commonly, HD may develop in youth (under 20 years – Juvenile HD) or older adults (Late Onset HD).

HD is caused by a defective gene on chromosome 4 that causes an excessive build-up of the protein, ‘huntingtin’. This protein build-up damages nerve cells in parts of the brain, affecting neurological function and causing HD. Each child of a parent with the defective gene has a 50% chance of inheriting HD.

It was estimated in 1996 that the prevalence for HD in NSW is 7.3 people per 100,000 of the population. Those at 50% risk of inheriting the HD mutation are estimated at 25.2 per 100,000.

Based on a population for NSW and ACT of 8,375,100 (ABS March 2018) this translates to:

  • 612 people with HD
  • 2,110 people at 50% risk.

In fact the prevalence is probably higher than this. New prevalence data are expected in the near future.

Currently, there is no definitive treatment or cure for HD. However, research has led to improvements in the management of symptoms. Research is being conducted worldwide to find effective treatments to delay the onset of HD and to slow its progression.

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National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Dancing at the Vatican documentary

An inspirational documentary telling the story of hope for Huntington's Disease families. Showing that if enough people who refuse to give in, come together, anything is possible.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.