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What is Huntingtons

What is Huntingtons  ? (A4 Brochure)

Huntington’s NSW & ACT is proud to provide information and support, research funding, and advocacy for everyone touched by Huntington’s Disease (HD).  

The core belief or our organisation is that we can change perceptions of HD by sharing information.  

This brochure is one easy way that you can help people to understand more about HD and hopefully even start conversations. 

If HD is a part of your life or family, please take the time to share your experiences and knowledge. This brochure is ideal for printing at home or work. It gives a very concise overview of HD, who is at risk, and the impacts. It also has guidance for people thinking about going through genetic testing for HD. 

Leaving a brochure in your work kitchen may not seem like a big deal. But every person who is better informed about HD and its effects is a potential supporter and ally. 

Donations over $2.00 to Huntingtons NSW & ACT are tax deductible.  

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Dancing at the Vatican documentary

Dancing at the Vatican is an inspirational documentary telling the story of a seemingly impossible journey made by families bound by the same devastating, genetically inherited disease, Huntington's. The film captures this pivotal moment of hope for Huntington's Disease families in a film that will lift spirits after the ravages of 2020; 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.

HD News Spring 2020

Read our HD News Spring 2020 edition.

National Carers Week 2020

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

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.