Invitation: Join the New Australian Rare Disease Research Network and Australia’s Top 10 Rare Disease Research Priorities Launch

Rare Voices Australia (RVA) is facilitating the first meeting for the new Australian Rare Disease Research Network (ARDRN) on 18 September 2025 between 1pm and 2pm AEST. The virtual event will also mark the official launch of Australia’s Top 10 Rare Disease Research Priorities report. RVA will facilitate a discussion about the Top 10 priorities and the next possible best steps in terms of their implementation.

As the national peak body for Australians living with a rare disease, RVA engages with all rare disease stakeholders, including researchers. RVA already engages with Australian rare disease researchers through our Scientific and Medical Advisory Committee (SMAC) and RVA’s Research Partnerships Program.

Eligibility and Aims of the Australian Rare Disease Research Network

Facilitated and chaired by RVA and SMAC members, Clin/Prof Gareth Baynam, Dr (Elizabeth) Emma Palmer and Dr Lisa Ewans, the ARDRN aims to broaden RVA’s reach, bringing together a community of rare disease researchers across Australia. The ARDRN offers rare disease researchers a platform to connect and stay informed about the changing rare disease policy landscape, RVA’s advocacy priorities, and to align with the Australian Government’s National Strategic Action Plan for Rare Diseases – the first nationally coordinated effort to improve health and wellbeing outcomes for Australians living with a rare disease.

The ARDRN is open to all Australian-based researchers involved in rare disease research across diverse disciplines and career stages who are formally and directly affiliated with academic or research institutions. Members will be invited to meet virtually through periodic virtual forums and email correspondence driven by gaps, opportunities and emerging needs in rare disease research.

Vision for the Australian Rare Disease Research Network

As it evolves over time, we anticipate the ARDRN will encourage:

• Increased Connectivity and Visibility
  A national community of rare disease researchers that is better connected, increasing visibility of rare disease research activity, expertise, and infrastructure across Australia.
• Collective Collaboration
  A vehicle for knowledge exchange to share plans, findings, and strategic priorities to minimise duplication and promote potential partnerships.
• Policy Focus
  A forum that facilitates research translation and alignment with the Action Plan, as well as other key Australian frameworks and global rare disease priorities.

Downloads

Australia’s Top 10 Rare Disease Research Priorities Report

Australia’s Top 10 Rare Disease Research Priorities

Registration

Register to join the ARDRN by completing the form below. Once registered, you’ll receive an invitation to the inaugural meeting and official launch of Australia’s Top 10 Rare Disease Research Priorities.

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