In December 2025, the Department of Health, Disability and Ageing (the Department) commenced public consultation on the evaluation of the Medical Research Future Fund (MRFF) Research Missions Program. Findings from the evaluation will inform a public report and guide future program direction and investment. Rare Voices Australia (RVA) is concerned that the newly announced round of the Genomics Health Futures Mission (GHFM) grant scheme does not explicitly reference or adequately address rare diseases.
Rare Disease Research Funding Through the Missions Program
Based on RVA’s knowledge as the national peak body for Australians living with a rare disease and input from the Australian Rare Disease Research Network (ARDRN), rare diseases have primarily been represented through the GHFM. This is reflected in increased funding for rare disease projects linked to targeted genomic newborn screening initiatives. However, as stated, the newly announced round of the GHFM grant scheme does not explicitly reference or adequately address rare diseases. This further underscores the need for a dedicated Mission focused on non-oncological rare diseases as a key recommendation for the Missions Program moving forward. RVA will continue advocating for this unmet need to be addressed.
MRFF Research Missions are large programs of work that aim to bring together key researchers, health professionals, stakeholders, industry partners and consumers to tackle big health challenges. Missions are programs of work with ambitious objectives that are only possible through significant investment, leadership and collaboration.
The Need for a Coordinated National Research Strategy for Rare Diseases
The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) calls for a coordinated national research strategy to address systemic evidence gaps. The rare disease community has further developed Australia’s Top 10 Rare Disease Research Priorities to guide public investment towards areas of greatest unmet need. Despite this clear policy direction, non-oncological rare diseases remain largely invisible within the current MRFF Missions framework.
As part of the Missions Program evaluation, in February 2026, the Department invited RVA and other peak body groups to an online interview to capture consumer views and priorities for the MRFF Research Missions Program. RVA also contributed a detailed written submission to the MRFF Evaluations Team.
RVA’s submission outlined several recommendations to strengthen the Research Missions Program’s responsiveness to rare diseases, including:
- Establishing a dedicated MRFF Mission for non-oncological rare diseases and appointing a specialist rare disease advisory group to guide mission design and implementation.
- Aligning funding calls with the Action Plan and Australia’s Top 10 Rare Disease Research Priorities.
- Embedding policy readiness and translation planning within mission design to support translation readiness.
- Improving representative consumer and community involvement.
- Ensuring sustained funding through the full disbursement of allocated funds, and greater centralisation and coordination of funding.
- Strengthening national coordination, infrastructure and internationally interoperable trial and data systems.
Thank you to RVA’s Scientific and Medical Advisory Committee and members of the ARDRN for their expertise, which informed RVA’s submission.
