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We are recruiting – Support Services Administrator

Published date: 2 February, 2023

We have created a new position for an enthusiastic and committed person wanting to be part of an inclusive and supportive team in a growing NDIS specialist business and specialised programs, supporting people living with Huntington’s disease (HD) and their families. In this part-time role you will be responsible for providing administration support to a ... Read more

CEO announcement for Huntington’s Australia

Published date: 16 January, 2023

Following the recent announcement about State Association memberships agreeing to proceed with a national merger, Huntington’s Australia (HA) has appointed a new CEO to lead the new association. Lenni Duffield, from Huntington’s WA, has been unanimously endorsed by the HA Board as the inaugural CEO of Huntington’s Australia. Lenni has held senior roles and provided ... Read more

Members have agreed to merge into a new, single entity, Huntington’s Australia

Published date: 6 December, 2022

We’ve got some great news to share! Members of five State and Territory organisations (Queensland, NSW ACT, Tasmania, SA&NT and WA) have agreed to merge into a new, single entity, Huntington’s Australia (HA). We are all very excited about the opportunities this will provide to the Huntington’s community. The merger will bring together five associations ... Read more
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HD News Spring 2022

Published date: 22 November, 2022

Download your copy of HD News Spring edition by clicking on the link. Some of the highlights in this edition are: Information on the proposed merger Growth of our NDIS team Walk 4 Hope wrap up Youth Connection program update and some exciting news We hope that you enjoy this edition of HD News. If you ... Read more

Awarded for the Association Turnaround of the Year

Published date: 10 November, 2022

The Association Awardsᵀᴹ recognise excellence and accomplishment by associations and outstanding individuals. In addition to recognition, the process of nominating for an Award will be a worthwhile experience as it will encourage associations to consider the factors that make a successful association, turnaround or campaign.
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APDA – The Good, The Bad & The Hack

Published date: 10 October, 2022

Huntington's NSW ACT is a member of The Accessible Product Design Alliance (APDA), which is a group of not-for-profit consumer health organisations working together to represent people with chronic conditions who are significantly impacted by inaccessible products and packaging. This campaign aims for those living with a disability to share their experience of different products to raise awareness of accessible and inaccessible experiences, support others to make their lives easier and help us educate product and packaging manufactures about what they need to improve.

Proposed Huntington’s State Associations’ merger going to a membership vote

Published date: 30 September, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Each State Board has determined that the merger is the best path forward for enhanced and sustainable supports and services to be provided for people affected by Huntington’s disease.

Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial

Published date: 29 September, 2022

SELECT-HD (NCT05032196) is an adaptive trial designed to rapidly optimize dose level and frequency based on early indicators of target engagement. The trial update announced today is being driven by the observation of reductions of mutant huntingtin (mHTT) protein in cerebrospinal fluid (CSF) after study participants received either a single 30 or 60 mg dose ... Read more

Possible merger of Huntington’s State Associations

Published date: 15 August, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Firstly, we would like to thank everyone for their feedback. We are heartened that the overwhelming majority of you are very supportive. There are some concerns, however, most commonly about preserving local services and community engagement.
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HD News Winter 2022

Published date: 1 August, 2022

This is your downloadable copy of the HD News Winter 2022 edition. In this edition you'll be able to read up on the Walk 4 Hope and how to register, HDNA and the map-HD registry and more.