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What is 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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Dancing at the Vatican documentary

Dancing at the Vatican is an inspirational documentary telling the story of a seemingly impossible journey made by families bound by the same devastating, genetically inherited disease, Huntington's. The film captures this pivotal moment of hope for Huntington's Disease families in a film that will lift spirits after the ravages of 2020; 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.

HD News Spring 2020

Read our HD News Spring 2020 edition.

National Carers Week 2020

Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.