The best quality of life for every person in Australia affected by HD.
- Map the families, clinicians, and support services
Create a complete picture of HD across Australia.
- Develop an Australia-specific HD model of care
What are the disparities and unmet needs across Australia that need to be addressed?
- Bring rapid uptake of treatments and interventions
Facilitate Therapeutic Goods Administration (TGA) and Pharmaceutical Benefits Advisory Committee approval. Implement training for clinicians and support services to ensure high standards of care, and level opportunities for all HD families in Australia.
We need to create a complete map of Australia showing the towns, cities and regional locations where families with HD live. Understanding how HD families are dispersed across Australia will guide efforts to ensure treatments and services are delivered. The HDNA values justice for all people affected by HD. No person with HD in Australia should be left behind once we have treatment options that can improve their lives.
The Map-HD Registry is a key enabler for:
- Understanding the unmet needs of patients
- Facilitating the match of patient needs to services
- Collecting key data to inform applications for TGA approval
- Listing of treatments on the PBS
The HDNA researchers continue to apply for grants with colleagues around Australia to:
- Accelerate the path to treatments
- Develop novel, tailored solutions to the broad expanse of Australian geography and our culturally diverse population
- Develop a self-driven model of care to enable families affected by HD to create and navigate a path through the Australian HD care landscape
A model of care for HD needs to articulate the standards of care that all people with HD in Australia should expect. Articulating this model, and overlaying the stages of HD can facilitate getting the best from the NDIS for people with HD. We know that families affected by HD have much they bring to the table. We want to work with them to create the tools they need to navigate the systems and support each other in their HD journey.
We need to start paving the way for treatments. Not all treatments include drugs. We believe it will be many more years before there are drug treatments for every HD patient. Clinical trials right now are focused on early stages, and only beginning to think beyond this to juvenile HD and later stage HD. We must be looking at alternatives that encourage everyone to tap into treatments that can improve their lives. Lifestyle treatments such as exercise, dietary changes, psychotherapy, mindfulness and stress reduction, improved sleep, etc. hold great promise.
We want to further Australian involvement in international efforts aimed at developing new treatments. Australia has a small but very active contingent of HD treatment researchers. We are working to support each other and facilitate dissemination of good practices.
Inclusive, generous, respectful, helpful, fair and equitable.
People in Australia affected by HD are entitled to the best care and treatments, which should meet international standards, and be adapted to the Australian health care, disability care, and aged care funding opportunities.
HD is a family disease, and every person affected by the fact that HD is in their family, deserves to have any assistance they need to be able to live their best lives in the face of the challenges of HD.
All people affected by HD across Australia are entitled to the best care and opportunities. We must overcome the challenges of having significant regional and remote populations, and the lack of specialist care across much of Australia, to ensure the best care and opportunities for all.