The Australian Rare Disease Research Network is facilitated and chaired by Rare Voices Australia (RVA), as the national peak body for Australians living with a rare disease, and RVA Scientific and Medical Advisory Committee (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. It offers rare disease researchers a platform to connect and stay informed about:

• The changing rare disease policy landscape.
• Aligning with, and contributing to, the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan).
• Progressing Australia’s Top 10 Rare Disease Research Priorities.
• RVA’s advocacy priorities.
• Australia’s alignment with international research groups.

Through the ARDRN, RVA aims to better understand shared systemic barriers and enablers to rare disease research and translation. These insights will inform and strengthen RVA’s advocacy messaging and policy submissions on the policy, systems and funding realities of rare disease research in Australia.

The Action Plan is the first nationally coordinated effort to address rare disease in Australia. Developed by the rare disease sector, for the rare disease sector, the Action Plan provides a comprehensive policy framework. In recognition of the importance of rare disease research, Pillar 3 of the Action Plan is Research and Data.

RVA led the collaborative development of the Action Plan in 2018 and 2019 through an extensive nation-wide multistakeholder consultation process. RVA is now working in partnership with stakeholders to support the collaborative implementation of the Action Plan, recognising that implementation is the shared responsibility across the entire rare disease sector.

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 are invited to meet virtually through periodic virtual forums that explore gaps, opportunities and emerging needs in rare disease research.

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.

As the national peak body for Australians living with a rare disease, RVA engages in rare disease health and medical research advocacy, including calling for greater public investment in rare disease health and medical research and for a national approach to rare disease data. In line with the Action Plan, RVA advocates for investment into all types of rare disease research. Learn more about RVA and research.

RVA also engages with Australian researchers through our SMAC and RVA’s Research Partnerships Program. Additionally, RVA is also actively involved in several international rare disease research initiatives.