1800 244 735

Helpline (02) 9874 9777

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: info@hdnswact.org.au.

There are also a number of valuable resources available below:

Share on facebook
Share on twitter
Share on pinterest
Share on email

Resource Library

AUDIENCE

TOPICS

RESULTS FILTERED BY:

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.

Carer self-care and wellbeing workshops

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

Featured Support Groups and Services

Online Carers Support Group

Calendar of events
This is a facilitated group for people who are caring for a partner, family member or friend with HD.
Places are limited to 8 therefore RSVPs are essential.

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.