1800 244 735

Helpline (02) 9874 9777

Community Survey 2020

Please take 5 minutes to complete the Community Survey 2020.

We’d really value your input to help guide our decision-making.

Participate and forward the link to others in your HD community to help inform our strategic and business planning: 10 questions, no more than 5 minutes.

Remember there will be a ballot drawn from those who complete the survey by 31/12/20 for a free weekend away at a beautiful 4-bedroom holiday house near Wollombi, donated by a very generous anonymous benefactor.

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Latest News and Stories

Hoping Machine documentary by Charles Sabine

CHDI Foundation Postcards

Published date: 15 November, 2021

The Postcards are a series of short videos aimed at non-scientists that convey the major themes, scientific breakthroughs, and clinical trial updates from each year’s Huntington’s Disease.

Introducing Prof. Kenneth Serbin – guest speaker at AGM

Published date: 11 November, 2021

Kenneth P. Serbin’s mother Carol died of Huntington’s disease in 2006 after a 20-year battle against the disease. Serbin tested positive for the HD gene in 1999. His daughter Bianca tested negative for HD in the womb and is today a healthy 21-year-old college senior. Since 1998, Serbin has served as a volunteer advocate for ... Read more

HD Spotlight on Amy Hale

Published date: 2 November, 2021

Here from our Youth Social Worker, Amy Hale, on why she became a social worker, how she got involved in the HD world and what her ideal Sunday is.

HD News Spring 2021

Published date: 1 November, 2021

Download your copy of the HD News Spring 2021 here. We hope that you enjoy reading the latest news from Huntington's NSW ACT. If you have any feedback or questions please contact us at the office.
Carer opening a care hamper

Celebrating National Carers week

Published date: 28 October, 2021

Thank you @CarersNSW Our Carer Support groups received a donation from CarersNSW to help celebrate National Carers week (Sunday 10th Oct-Sat 16th Oct). Each region was planning to host an event for their Carer group but unfortunately COVID hijacked these plans. Instead carers of the Port Macquarie and Wollongong Support groups received a phone call, ... Read more

Accessible Product Design Alliance

Published date: 13 September, 2021

The Accessible Product Design Alliance is a group of not-for-profit consumer health organisations that represent people with chronic conditions who are significantly impacted by inaccessible products and packaging. The Alliance was formed in 2019 to advocate to government and industry to improve access to products and packaging that are easy to use for these consumers and to increase research in the area.