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Professionals

Huntington’s NSW ACT works closely with allied health and social care professionals to ensure the best possible quality of life for people with Huntington’s disease. In collaboration with the Huntington’s Disease Service of the NSW Ministry of Health we provide Information Services to professionals caring for people with HD.

The services included encompass phone consultation, information brochures, online resources, newsletters, social media activities, workshops and seminars.

There are also a range of support and services available for individuals, carers, family and friends, young people affected by Huntington’s disease.

We work closely with, and are supportive of other organisations including:

  • the Huntington’s Disease Clinic and Outreach Program at Westmead Hospital;
  • Huntington’s Unit at St Joseph’s Hospital, Auburn;
  • the Predictive Testing Program at the Children’s Hospital, Westmead; and
  • the Huntington’s Disease Service for the Hunter Region, Newcastle.

Please contact the office if you would like to discuss services or request an information session or workshop. Phone 02 9874 9777 email: [email protected].

There are also a number of valuable resources available below:

Resource Library

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Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more

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

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.

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.

Featured Support Groups and Services

Huntington’s NDIS Support Coordination and Specialist Support Coordination

We understand the progressive neurodegenerative nature of Huntington’s disease and the effects it can have on a person’s day-to-day life and the impacts it has on their carers. The support coordinators will work with you at your pace to remove some of your daily stress by coordinating your supports. We are here to empower you to live a quality life with dignity and autonomy. We know that people who are experiencing symptoms of Huntington’s can lose capacity to direct their own life.

Huntington Disease Service – Westmead Hospital University Clinic

GP/Specialist referral required for this service. This service provides regular Medical review by Huntington disease specialist Neurologists for anyone with Huntington disease, at all stages of the disease. It is also available for those at risk of inheriting Huntington’s disease or undergoing testing for Huntington disease. The Social Workers provide support and advice for social ... Read more

Music and Social club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 80% of the NSW/ACT population are vaccinated against COVID-19.

‘My Voice’ Art club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 80% of the NSW/ACT population are vaccinated against COVID-19.