Inaugural Australian Rare Disease Research Network Meeting
The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, with 38 rare disease researchers from a range of jurisdictions, disciplines and career stages in attendance. Rare Voices Australia (RVA) thanks everyone who joined the meeting, including members of our Scientific and Medical Advisory Committee (SMAC)—Dr Emma (Elizabeth) Palmer, Clin/Prof Gareth Baynam and Dr Lisa Ewans and Prof Adam Jaffe—for co-chairing and presenting.
The meeting marked the formal launch of the ARDRN—an initiative designed to broaden RVA’s engagement with researchers, encourage increased connectivity, visibility and collaboration among Australian rare disease researchers, and facilitate research translation and alignment with the Australian Government’s National Strategic Action Plan for Rare Diseases and international rare disease priorities.
A key focus of the meeting was the official launch of Australia’s Top 10 Rare Disease Research Priorities (the Top 10). ARDRN members recognised the Top 10 as a valuable tool for guiding future research agendas, informing funding applications and aligning with international efforts. The discussion also highlighted the importance of presenting rare diseases as a national research priority to attract sustainable investment and elevate the profile of rare disease.
During the meeting, ARDRN members highlighted several challenges for rare disease research in Australia, including:
- Limited and fragmented funding opportunities
- Registry and database sustainability
- Ethics and governance approvals across jurisdictions
- The lack of designated rare disease centres of expertise
- Barriers to translating research into policy and clinical practice
Members also shared opportunities for the ARDRN, including building a cohesive voice that amplifies the visibility and expertise of rare disease health and medical researchers, strengthening meaningful consumer involvement in rare disease research, fostering stronger collaboration across disciplines to avoid duplication, leveraging international exemplars such as the International Rare Disease Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA), and ensuring research directly informs both health and disability systems.
Attendees expressed interest in future ARDRN meetings focusing on sharing successful strategies for securing Commonwealth funding for rare disease research, and best practices for involving people living with rare diseases in research.
The ARDRN will continue to host regular forums, collectively monitor gaps and opportunities, and advocate for rare diseases to be recognised as a national research priority. For updates on the ARDRN, please follow RVA’s monthly eNewsletter. You can subscribe to receive these updates via this form if you haven’t already.
