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Kids & Young People

This page has information for Kids and Young People who live with someone with HD, know someone with HD, or have HD themselves.

For information about our Youth Connection Program, please click here

 

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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.

Isolation tips and support for young people and their families 

WORDS AMY HALE
As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.

Coping well and finding resilience

WORDS AMY HALE
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.

Insurance Breakthrough

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

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

WORDS AMY HALE
As the youth social worker, one topic I encounter all the time is genetic testing and the decision a lot of young people face –should I test or not?

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

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.