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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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.

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.

Global Connections for Huntington’s NSW ACT

WORDS LEWIS KAPLAN
I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping with self-isolation for People with Huntington’s disease

Huntington’s disease can be challenging on a good day, therefore preparing for self-isolation and being informed on the best ways to cope during this difficult and confusing time is very important. Below, are some tips on coping with COVID-19 isolation for people with Huntington’s disease.

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.

Travel Assistance

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.

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