Huntington's AustraliaAbout Us

About Us

Welcome to Huntington’s Australia

Huntington’s Australia (HA) is the peak national body dedicated to supporting individuals and families impacted by Huntington’s disease (HD) across Australia.  

In October 2023, Huntington’s Australia was formed through the unification of five state and territory associations. Today, we provide a stronger, more coordinated voice for the HD community across the country.

Huntington’s Australia exists to support individuals and families impacted by HD with care, respect, and integrity. Most importantly, we believe in working together to create a future where no one faces this journey alone. 

What does Huntington’s Australia do?

We exist to improve the quality of life for those impacted by Huntington’s disease including individuals, families, carers, and support networks.

We offer a range of services and support, including: 

  • Regular community catch-ups and support groups
  • Advocacy and awareness campaigns 
  • Fundraising, advocacy, and awareness events and campaigns  
  • Assistance navigating and accessing the NDIS and other government supports 
  • Training and education for social and health practitioners to improve understanding of HD 
  • Provide families with counselling, so that they better understand the condition and how it impacts them.

Huntington’s disease impacts everyone differently. So, it’s important we treat each person living with HD as an individual. At Huntington’s Australia, that’s what we strive to do.

How can we help you?

Whether you’re a person living with Huntington’s disease, have someone in your life who is, or just want to learn more, we can help. Check out our Supports & Services page or contact Huntington’s Australia here. 

Frequently Asked Questions

Every child of a parent who carries the expanded huntingtin gene has a 50% chance of inheriting the gene. If your parent does not have the gene, then you are not at risk of developing HD or of passing it on.

Huntington’s disease (HD) is an inherited neurological condition which is passed down from parent to child. This means that if you have a parent with the expanded huntingtin gene, you have a 50% risk of inheriting it yourself. However, if neither of your parents have HD then you are not at risk of inheriting the gene.

In 1993, the Huntington gene was discovered, which allowed for the development of a direct gene test. This means that you can find out whether you have the gene before the onset of symptoms. The predictive test identifies if the HD gene you inherited from your parent is the one that causes Huntington’s disease.

There is no right or wrong answer to this question. Making the decision to be tested is very difficult and not one to rush into. We recommend that you contact a Predictive Testing Centre to discuss this decision at greater length. To find a service near you click here.

If you are at risk of HD and would like to find out if you are gene positive, then you will need to contact a Predictive Testing Centre. As part of this process, you will engage in some counselling sessions with a genetic counsellor. They will be able to provide you with further information on the program and details about what is involved.

The answer is yes; however it is best to talk to the genetic counsellor at the predictive testing program about this. A person’s gene status will have implications for their parent, particularly if they are found to be gene positive, so it requires consideration.

Fortunately, with the development of IVF (in vitro fertilisation) and PGD (Pre-Implantation Genetic Diagnosis), people are now able to conceive a child without the expanded HD gene, and without disclosing their own gene status.

For further information please reach out to our Programs team on 1800 244 735 or programs@huntingtinsaustralia.au.

This means that each one of your children has a 50% chance of inheriting the defective HD gene.

Statistics now indicate that HD has a prevalence of between 8-10 people per 100,000. In Australia, an estimated 2,400 people live with Huntington’s disease.

No, it affects men and women equally. The HD gene is on chromosome 4, which is a non-sex chromosome.

Juvenile Huntington’s disease affects people under the age of 20 years and like the adult form is hereditary in nature. It occurs when the CAG repeat is expanded to over 60 repeats. Juvenile HD accounts for 3-10% of all HD cases in the western world. To find out more on Juvenile Huntington’s, click here.

As HD is a neurodegenerative condition, people typically live for 10 – 25 years following the onset of symptoms. However, everyone experiences Huntington’s differently, and it is difficult to determine when the onset of symptoms might occur and how gradually they will progress.

It is impossible to predict exactly when you will develop symptoms of Huntington’s disease. However, most people begin to show signs of HD between the ages of 30 and 50 years.

Yes, there is medication available to assist with managing symptoms of HD, depending on what they are and their severity. We recommend speaking to your GP for further information.

At the moment there is not a cure for HD, however research is currently taking place in Australia and internationally. For more information visit Huntington Study Group or Enroll-HD.

Medication cannot slow the progression of Huntington’s disease, however there may be solutions that assist with managing its symptoms. As always, speak to your GP for strategies tailored to you.

Huntington’s disease is a rare condition, and it’s possible that your healthcare provider hasn’t experienced a patient with HD before. Unless HD is known in your family, it may not be something that GPs routinely look for as there can often be other explanations for your symptoms, other than HD.

We recommend telling your GP of any family history relating to GP if you are aware of it.

A clinical trial is a medical research study involving people, where researchers test new medicines in a laboratory and controlled setting.

Clinical trials with promising results are then submitted to quality health care committees for review and approval before any studies with people can begin. For further information visit Huntington Study Group or Enroll-HD.