News articles

People with Huntington’s disease require high levels of specialised care in order for them to manage daily living tasks. Specialised housing for people with Huntington’s disease in Australia is limited. This is in part due to a lack of funding and in part due to a lack of appropriate facilities. For many people, this means that their only option is to live in residential aged care (RAC). Living in RAC is generally not appropriate given that the environment often has a lack of age-appropriate activities, and social interaction.

The end of the financial year is just around the corner, and we need your help. You can support the valuable work of Huntington’s NSW ACT by kindly making a tax-deductible donation before June 30. Your donations will help our team connect and care for individuals and families affected by Huntington’s Disease across NSW and the ACT.

Please join with the HDNA as we work toward facilitating the best quality of life for every Australian affected by Huntington’s Disease (HD). Now more than ever, research teams and companies across the globe are testing possible treatments for Huntington’s Disease.

As a valued person within our HD community, we are writing to let you know that Huntington’s NSW ACT, along with the four other State HD Associations of Tasmania, SA & NT, Queensland and Western Australia, have commenced a process to consider whether or not to form a single national entity, joining together as one organisation.

The Neurological Alliance Australia (NAA) seeks commitments from parties and candidates for the upcoming Federal Election to address the urgent needs of adults and children living with neurological diseases in Australia.  

The Huntington’s Disease Associations of New Zealand invite members, non-members, families and healthcare professionals to attend their conference on June 10 and 11. There is an online option if you are interested in finding out more visit their website.

Download your copy of HD News Autumn 2022 here. We hope that you enjoy reading the latest news from Huntington's NSW ACT. If you have any questions or feedback please contact us at the office.

We are delighted to share that Professor Elizabeth McCusker has been awarded OAM by the Governor-General in the Australia Day 2022 Honours List. Prof McCusker was awarded OAM for her service to medicine as a neurologist, particularly in the field of Huntington's disease.

Based on findings from the GENERATION HD1 study in adults with manifest HD, Roche has announced that the tominersen research program will continue with a new Phase II trial. Roche-Genentech-HD-Global-Community-Letter-January-2022   Two information sessions have been scheduled to provide more information. See details below.   Huntington’s Disease Society of America Thursday 20th January at 3pm ... Read more

Huntington’s NSW ACT is recruiting for a full-time position of NDIS Support Coordinator – Huntington’s Disease based at our West Ryde office. This important and challenging role will suit an experienced social worker seeking to work with families living with Huntington’s disease (HD). Huntington’s NSW ACT is the peak body representing the Huntington’s community in NSW and the ACT. We support people affected by Huntington's disease to live their best life.