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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

We are so close to merging into Huntington’s Australia

Published date: 14 September, 2023

We are now only a matter of weeks away from commencing business as Huntington’s Australia (HA). It has been an enormous effort from so many people to get us to this stage, where we are standing on the precipice of a new, interconnected, national approach to providing supports and services to the Australian HD community.

We are recruiting – Fundraising & Events Coordinator

Published date: 4 August, 2023

Huntington’s Australia is a national leader in the delivery of services to support and empower people impacted by Huntington’s Disease (HD) to live their best life. We provide NDIS services, community education, individual and group capability building activities and advocacy at all levels. As part of the Business Development, Fundraising and Partnerships Team this role ... Read more
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HD News Winter 2023

Published date: 31 July, 2023

Download your copy of HD News Winter edition by clicking on the link. Some of the highlights in this edition are Introduction to our HD Youth Specialist and program update, HD Awareness Month and the High Tea 4 HD, an update on the progress of Huntington's Australia, dates and registration details for Walk 4 Hope.
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We are recruiting – HD Specialist

Published date: 5 July, 2023

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 (HD) to live their best possible life, while striving to eliminate the factors that make our organisation necessary. We provide leadership in Huntington’s disease information, education, awareness, support and advocacy. 

Merger date delayed for Huntington’s Australia

Published date: 8 June, 2023

As a valued member of the HD community, we’d like to keep you up to date with Huntington’s Australia (HA) developments. A summary of the article: Our NDIS registration is taking longer than expected and as such the merger date of 1 July has been postponed. The different associations are working together to share resources ... Read more

An update on all things Huntington’s Australia

Published date: 29 March, 2023

As a valued member of the HD community, we’d like to keep you up to date with Huntington’s Australia (HA) developments. The merger implementation is in full swing and just about everyone is getting involved in some way, shape or form. All staff are in the process of having discussions with our CEO, Lenni, and our HR Specialist, Lyn, about transitioning into the new HA organisation. We are still expecting that most of the staff employed by State Associations will transfer to HA. In addition to our CEO, we now also have another two of the senior management team selected, and both are starting this month - Leah Atkinson as the Head of Finance and Corporate Services and Basil Mabuza as the Head of Community Programs and Services.