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].