Rare Voices Australia (RVA) supports the need for high quality, collaborative rare disease research that is person-centred and positively impacts Australians living with a rare disease. Learn how RVA engages in rare disease health and medical research advocacy as the national peak body for Australians living with a rare disease, on the research page.

To better support our research partners and respond to ongoing demand, RVA accepts new Research Partnership Proposals during set periods. The 2026 Research Partnerships Scheduled is outlined below:

• 13 July – 13 September
• 6 October – 30 October
• 16 November – 6 December

Proposals received outside of these timelines will not be accepted. You are welcome to resubmit your Research Partnership Proposal during the next intake period.

RVA can provide limited in-kind support. Budgeted support enables partners to fully leverage RVA’s expertise and contributions.

RVA welcomes genuine partnerships with groups planning or undertaking research that addresses core principles outlined in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan is the first nationally coordinated effort to address rare diseases in Australia.

In recognition of the importance of rare disease research, Pillar 3 of the Action Plan is Research and Data. Learn more about the Action Plan.

• Aligns with the Action Plan and Australia’s Top 10 Rare Disease Research Priorities.¹
• Relates to, or is transferable to, a range of rare diseases and is collaborative and person-centred.
• Responds to unmet need in rare disease and/or addresses existing gaps.
• Involves coordinated and collaborative data collection that facilitates increased knowledge of rare diseases.
• Is feasible, scalable and designed for translation to achieve real-world impact.

RVA is highly experienced in providing consultancy to researchers with a focus on linking and translating research into policy. RVA consultancy includes:

• Provision of broad, cross-cutting rare disease stakeholder knowledge and expertise as Australia’s national peak body for Australians living with a rare disease, including a strong track record in effective rare disease advocacy and policy influence.
• Support to align your research with priorities in the Action Plan.
• Support to identify opportunities for translation of research outcomes into measurable impact, including rare disease policy reform to achieve the best possible health and wellbeing outcomes for Australians living with a rare disease.
• Provision of broad rare disease consumer expertise.
• Guidance on a person-centred approach to research co-design and implementation.
• Links to a network of over 100 rare disease consumer groups and other rare disease stakeholders. (In most cases, RVA can provide these links without a formal research partnership, if this is all that is required.)
• Assistance convening focus groups to facilitate meaningful consumer engagement.
• Support leveraging external grant funding for rare disease research.

Please read RVA’s Research Partnership Guidelines before contacting us with your Research Partnership Proposal.

To submit a research partnership proposal, please fill in RVA’s Research Partnerships Proposal Form below. Please submit the form as early as possible and not fewer than 10 business days prior to any grant submission deadline. The form will also prompt you to send a project synopsis via email, including objectives and expected outcomes.

Your request will be reviewed by RVA’s Chief Executive Officer and Research and Evaluation Manager against RVA’s Research Partnership Guidelines. Proposals aligning with RVA’s research priorities and the Action Plan will be progressed to the next step, which usually involves further discussion via video conference.

Please note: A new Research Partnership Proposal must be submitted to RVA for every project, including from existing RVA research partners. This includes new project proposals, proposals that are a continuation of previous projects, or resubmissions of previous or similar Research Partnership Proposals to new grant rounds.