In February 2022, Rare Voices Australia (RVA) and Equity Economics and Development Partners launched the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia (the White Paper). This pilot project, focusing on the workforce challenges of the rare metabolic disease workforce, is an initial step to progress the development of a national rare disease workforce strategy. It specifically addresses Priority 3.1 of the National Strategic Action Plan for Rare Diseases, ‘Develop a national rare disease workforce strategy that respond to current and future demands, including the impact of genomics’.
Since its launch, RVA has had formal meetings and/or engaged with key politicians and State Departments of Health across New South Wales, Victoria, Queensland, Tasmania, Western Australia and South Australia, as well as with experts from the Human Genetics Society of Australasia (HGSA) and the Australasian Society for Inborn Errors of Metabolism (ASIEM) regarding the White Paper. The purpose of these meetings was to share White Paper findings relevant to each jurisdiction and discuss the way forward to address the urgent unmet need and barriers to delivering best practice rare metabolic care for all Australians.
Based on discussions at these meetings and guided by the 5 key findings in the White Paper, RVA has been developing a Draft Strategy for the Australian Rare Metabolic Workforce (Draft Strategy). The Draft Strategy outlines goals, recommendations and priority actions for improving outcomes for people living with a rare metabolic disease. Consultations are still underway to develop the Draft Strategy to ensure it is robust and attainable. The Draft Strategy will soon be shared with the White Paper Steering Committee, HGSA, ASIEM and other key stakeholders.
Adding to RVA’s list of post-launch consultations and led by the keen interest of several RVA Partner organisations, on 13 July, RVA met virtually with several RVA Partners to share and discuss the Draft Strategy. Following this meeting, the Draft Strategy was revised to address key concerns and gaps raised by RVA Partners. In the same forum, RVA Partners worked together to co-develop an advocacy strategy that not only broadly promotes the White Paper findings and Draft Strategy, but also overlays the nuanced challenges of their communities living with very different rare metabolic diseases. RVA Partners committed to an advocacy strategy that leverages their existing collective relationships to influence key decision makers in every jurisdiction across Australia.
RVA would like to thank the following RVA Partner organisations for their attendance at this meeting and ongoing support and involvement in this body of work.
- Australian NPC Disease Foundation
- Australian Pompe Association
- Gaucher Association of Australia and NZ
- Immune Deficiency Foundation of Australia
- Metabolic and Dietary Disorders Association
- Mito Foundation
- Sanfilippo Children’s Foundation
If you would like more information about this work, or if you are an RVA Partner wanting support to advocate on behalf of your community about the implications of the White Paper findings or Draft Strategy please contact Louise Healy, Education and Advocacy Manager, at firstname.lastname@example.org.