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News articles

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.

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.
donate scene cartoon

Could you become the next Treasurer of Huntington’s NSW ACT?

Published date: 23 August, 2021

With our sister organisations in Canada, the UK and some parts of North America, Huntington’s NSW started as a small group of people in the mid-1970s who were determined to bring Huntington’s disease (HD) “Out of the Darkness”, to bring together isolated families and advocate for their needs. We added the ACT to our organisation ... Read more
young board members

We are recruiting a Social Worker for the Illawarra

Published date: 16 August, 2021

Huntington's NSW ACT is excited to announce a new part-time position of Huntington's disease (HD) Social Worker, based in Illawarra. The establishment of this position fulfills a long-held ambition to support people with HD and their families in the Illawarra and Shoalhaven areas.

IHMRI Science Week Webinars

Published date: 10 August, 2021

IHMRI Bite Size Science Week Webinars – Register here Have you ever had a health related science question but haven’t had the opportunity to ask it? Well, now you can if you register for IHMRI’s Bite Size Science Webinars! To mark National Science Week, IHMRI researchers will be covering important topics such as pain management ... Read more

PGT to start 1st November

Published date: 29 July, 2021

GREAT NEWS. PGT testing funding is available from 1st November 2021 for HD families.

HD News Winter 2021

Published date: 22 July, 2021

Download your copy of the HD News Winter 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.

PGT will be available for Huntington’s families

Published date: 18 May, 2021

Huntington’s families now have several options when considering when and how to have children. One of these options is PGD – Pre-implantation Genetic Diagnosis, sometimes known as PGT. This allows people to use IVF technology to ensure that only embryos without the HD-causing mutation are implanted, meaning that these children will grow up HD-free.