1800 244 735

Helpline (02) 9874 9777


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 08 6457 7599 email: info@huntingtonsnsw.org.au.

There are also a number of valuable resources available below:

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Resource Library




Global Connections for Huntington’s NSW ACT

I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping well and finding resilience

Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.

Travel Assistance

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.

NDIS assisted technology and home modifications

What does this mean and what should I expect?

Insurance Breakthrough

Moratorium on Genetic Tests in Life Insurance came into effect in Australia from 1 July 2019 and will end on 30 June 2024.

Youth Space – Testing

Predictive testing for Huntington’s disease: a big decision for young people

Featured Support Groups and Services

Huntington’s NDIS 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 Huntington Disease Service – Westmead Hospital University Clinic

Music and Social club

The music therapy approach chosen is resources orientated focusing on a person’s strengths, followed by some hardcore UNO. This music and social club is for those in the earlier stages and independent with all activities of daily living. The club meets fortnightly on a Tuesday between 10.00 AM and 12.00 PM at Elsie Court Cottage, ... Read more Music and Social club

‘My Voice’ Art club

The philosophy of this art program is phenomenological in nature; promoting the development of self-awareness. The art experience allows a creative response which is unique to the person participating. This art club is for those in the earlier stages and independent with all activities of daily living.

Central Coast Carer Support Group

Calendar of events
This is a self-managed group for carers of a person living with HD in the Central Coast area.
This group meets monthly.
Meetings have been posted due to the COVID pandemic.
Come back regularly to check for updates.

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