This Rare Disease Day (28 February 2022), Rare Voices Australia (RVA) launched the much-anticipated Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (White Paper).
RVA hosted a webinar to launch the White Paper for those involved in the consultation process. Thank you to the following people who spoke at the webinar:
- Dr Angela Jackson: White Paper author and economist;
- Dr Kaustuv Bhattacharya: President, Australasian Society for Inborn Errors of Metabolism (ASIEM); and metabolic paediatrician, Genetic Metabolic Disorders Service (NSW);
- Anita Inwood: Director, Queensland Lifespan Metabolic Service; and
- Dr Falak Helwani: Co-author of the White Paper; and Research and Evaluation Officer, RVA.
Special thanks to the Project Steering Committee, RVA Partners, people living with a rare metabolic condition, the specialist metabolic workforce, industry and everyone else who contributed to this critical study.
White Paper downloads
Download the White Paper [PDF]
Download the White Paper Summary [PDF]
Next steps
Following the launch, RVA will:
- Communicate these findings to all key stakeholders;
- Further develop draft strategic actions in response to the key findings;
- Engage and collaborate with Commonwealth, state and territory governments, hospital administrators and ASIEM to review draft strategic actions and develop effective and sustainable solutions; and
- Finalise strategic actions to progress much needed change in each jurisdiction that is aligned with international best practice.
White Paper background information
Australia’s first nationally coordinated effort to address rare diseases—the National Strategic Action Plan for Rare Diseases —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. This White Paper is a pilot project focusing on the workforce challenges of the rare metabolic condition workforce and is an initial step to progress the development of a national rare disease workforce strategy. Many of the pilot’s findings will be transferable to other groups of rare diseases and will inform the development of a rare disease workforce strategy more broadly.
RVA, the national peak body for Australians living with a rare disease, engaged Equity Economics and Development Partners to undertake this comprehensive review and analysis of the Australian rare metabolic workforce.
Download the White Paper [PDF]
