1800 244 735

Helpline (02) 9874 9777

Contact our youth worker now

Click here to leave your requests for support, questions, comments or ideas and our youth social worker, Amy will get in touch with you ASAP.

Youth Connection Program

Being impacted by Huntington’s disease can make life really hard. Especially when you’re young and coming to terms with it all. Our Huntington’s NSW ACT Youth Connection Program is here to help!

Our youth worker can visit you at home, at school or anywhere else you like. We can talk with you about things that might be worrying or difficult for you. We can help you understand HD better and answer all of your big and small questions. If you’re out of town or prefer to be somewhere by yourself we can talk online too.

We can help you learn new ways to cope and give you some ideas to try when things get hard. We can invite you to our camps and events so you can meet other young people from HD families to share your stories, worries and experiences while doing cool things together.

We can talk to your teachers too if you say that’s OK, and find some ways to make school a little easier for you. We can also talk to your Mum, Dad, carer or anyone close to you to help them understand how HD might be making things harder for you and how they can help.

We’re also here to help parents and carers understand more about Huntington’s and how they have better conversations about it with their kids and young people. We offer a range of parenting support including parent counselling and access to some great HD resources for coping with these extra challenges.

Follow our links below or hit the big ‘Contact our Youth Worker’ button above to find out more.

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Youth 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

Music and Social club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 60% of the NSW/ACT population are vaccinated against COVID-19. Click here to find out more about this program.

‘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.