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Join the Map-HD Registry today

Please join with the HDNA as we work toward facilitating the best quality of life for every Australian affected by Huntington’s Disease (HD).

 

WHAT: Now more than ever, research teams and companies across the globe are testing possible treatments for Huntington’s Disease.

In Australia, are we ready to deliver new treatments for HD as soon as they become available internationally? No, not yet.

The Huntington’s Disease Network of Australia (HDNA) was born in 2020 to coordinate efforts that enhance care and services for HD and prepare for the advent of new HD treatments.

To help prepare for the advent of future treatments, please consider joining the Map-HD Registry.

The Map-HD Registry is for people in Australia who are affected by HD. All family members or people affected by HD are encouraged to register, whether or not they are at risk themselves.

WHY: The Map-HD Registry is needed to:

  • Map where families in Australia with HD live, so that care, treatments, services, and funding can be directed to the right locations;
  • Establish how many people are affected by HD to support requests to the Commonwealth and local governments for improved funding of care and new treatments; and
  • Provide essential information for future HD treatments to be approved in Australia and listed on the PBS.

WHO: Anyone affected by HD, including family members and carers can join the registry.

HOW: Visit the HDNA website at hdna.com.au and select the link to the Map-HD Registry.

CONTACT US: Do you want to talk with us first? Contact the HDNA at 03 9902 0081 or [email protected].

Latest News and Stories

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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.