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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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National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

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.