One year on from the launch of the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (White Paper)1, Rare Voices Australia (RVA) has launched the National Strategy for Australia’s Rare Metabolic Diseases Workforce (Strategy).2 The Strategy is an evidence-based, expert-backed framework of goals, recommendations and priority actions that address current high levels of unmet need through a nationally consistent and sustainable workforce.
RVA’s Chief Executive Officer, Nicole Millis, mentioned the Strategy in her speech at RVA’s Rare Disease Day Parliamentary Event on 8 March 2023 and highlighted the importance of sustainable systems and workforce for rare disease more broadly.
Special thanks to the Project Steering Committee, RVA Partner organisation leaders and other experts in the specialist metabolic workforce for their guidance in co-developing the goals, recommendations and priority actions for the Strategy.
Why Is This Work Important?
Australia’s first nationally coordinated effort to address rare diseases—the National Strategic Action Plan for Rare Diseases (the Action Plan)3—called for the development of a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics. ‘Sustainable systems and workforce’ is one of three foundation principles of the Action Plan.
The Strategy is an initial step to progress the development of a national rare disease workforce strategy. As the national peak body for Australians living with a rare disease, RVA is leading the collaborative implementation of the Action Plan.
About the Strategy
In 2022, RVA published the White Paper, 1 which together with sector consultation, informed development of the Strategy.2
A person-centred approach to implementing this Strategy is essential and is the responsibility of all stakeholders, including governments, hospital administrators, healthcare providers, specialist physician groups and policymakers across states and territories, and at a national level.
- RVA will share the Strategy with all key stakeholders
- RVA will seek meetings with Commonwealth, State and Territory Governments, Departments of Health and all specialist metabolic services across Australia to discuss timely implementation of the Strategy
Download the Strategy (PDF)
- Equity Economics and Rare Voices Australia (2022). Rare Metabolic Disease Workforce White Paper Towards a Strengthened Rare Disease Workforce for Australia, February 2022. Available From: https://rarevoices.org.au/wp-content/uploads/2022/02/RareMetabolicDiseaseWorkforce_WhitePaper.pdf
- Rare Voices Australia Equity Economics (2023). National Strategy for Australia’s Rare Metabolic Disease Workforce, February 2023. Available From: https://rarevoices.org.au/wp-content/uploads/2023/03/RareMetabolicDiseaseWorkforce.pdf
- Australian Government Department of Health. National Strategic Action Plan for Rare Diseases. Canberra; 2020. 63 p. Available From: https://www.health.gov.au/resources/publications/national-strategic-action-plan-for-rare-diseases