The HDNA aims to facilitate the best quality of life for every Australian affected by HD. The Mapping Working Group is one of the three initial working groups formed in June 2020 to support this goal. The aim of the Mapping Working group is to guide and advice the HDNA Project Team in mapping HD across Australia. Mapping HD helps us to understand who in Australia is affected by HD, what access people have to clinical care and support services and where additional resources are needed.
We believe an Australian HD map will provide the essential foundation for:
- Recognising the needs and preferences of the HD community to ensure these needs are reflected in our clinical, social and financial supports
- Building a network of skilled clinicians who are able to deliver treatments as they become available
- Characterising the incidence and prevalence of people affected by HD across Australia, and the economic impact of HD on both the healthcare system and via indirect impacts on employment
One of the best ways to Map HD across Australia is to encourage as many people as possible to join our registry. If you would like to get involved, it’s easy! Visit our registry page by clicking the link below and learn more about what is involved.
Insert Link to the Registry