Rare Voices Australia’s Submission: Draft National Health and Medical Research Strategy

Rare Voices Australia (RVA) congratulates Rosemary Huxtable AO PSM, Chair of the National Health and Medical Research Strategy (National Strategy), and the broader development team on releasing Australia’s first-ever draft National Health and Medical Research (HMR) Strategy (draft Strategy).

As the national peak body for Australians living with a rare disease, RVA was appointed to the National Strategy Technical Reference Group. The Technical Reference Group has been supporting the development of the National Strategy. Dr Falak Helwani, RVA’s Research and Evaluation Manager, has been participating in these meetings.

RVA acknowledges the challenges involved in bringing together diverse stakeholder perspectives and distilling them into an actionable strategic framework. The draft Strategy is appropriately detailed and future-oriented, with tangible examples of the change stakeholders want to see.

RVA welcomes the inclusive tone and ambition of the draft Strategy, particularly its vision of “Delivering for All.” However, RVA has called for several important refinements to ensure the draft Strategy genuinely reflects the needs of all Australians, including those living with rare disease.

Some Key Messages from Rare Voices Australia’s Submission:

RVA:

• Urged rare disease be explicitly mentioned in the draft Strategy. Rare diseases are recognised internationally as a global health priority and a leading driver of healthcare cost and inequity. Failure to highlight rare disease in the draft Strategy risks leaving two million Australians behind and falling out of step with global best practice, including the 2025 World Health Assembly Resolution on Rare Diseases (adopted by Australia), which urges member states to integrate rare disease into national health plans. Furthermore, explicit mention of rare diseases is important for implementing the goals of the National Health Reform Agreement to address significant gaps faced by Australians living with rare disease.
• Strongly recommended the inclusion of Policy as a core enabler in the draft Strategy and greater attention to the importance of policy throughout the draft Strategy. Equity cannot be achieved without resourcing policy development and reform. RVA stressed that while research builds evidence, it is policy that ensures equitable implementation of new care, treatments and knowledge.
• Stressed the fundamental importance of designing a draft Strategy that crosscuts all systems, including disability, and builds evidence to inform a whole-of-person approach to health and wellbeing.
• Urged replacing the words ‘consumer-centred’ with ‘person-centred’ throughout the draft Strategy. This framing is more inclusive of all stakeholders — consumers, clinicians, and researchers — and reflects a whole-person, partnership-based approach.
• Cautioned that emerging technologies, such as gene and cell therapies, may not benefit all Australians equally. To acknowledge this, RVA recommended the draft Strategy focus on ‘measurable’ rather than universal benefits.
• Encouraged explicit mention of the inclusion of consumer involvement in horizon scanning for new technologies.
• Recommended highlighting existing Australian Rare Disease Centres of Expertise as a proven model for integrating research and care.
• Highlighted current rare disease data gaps, which must be addressed. If left unaddressed, they will be a barrier to metrics to understand the success of the draft Strategy for the rare disease community.

Next Steps

Feedback from the submissions received will contribute to the refining of the draft Strategy. It is anticipated that the final National Health and Medical Research Strategy will be released in early 2026.

RVA’s full submission will be available on RVA’s website under Policy and Submissions, in time.