The Rare Awareness Rare Education (RARE) Portal is Australia’s growing national resource for rare diseases. Customised for the Australian context, the RARE Portal houses current, reliable and straightforward rare disease information. Funded by the Australian Government, information, resources, and individual rare disease pages continue to be added to the RARE Portal over time. As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the RARE Portal’s collaborative development.

The following links may take you to the information you are looking for. If you can’t find what you’re searching for listed below, additional resources are available on the RARE Portal.

The RARE Portal is a key deliverable of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), the first nationally coordinated effort to address rare diseases in Australia. The RARE Portal seeks to highlight strengths and where possible, address the gaps across the rare disease sector, to guide the way forward for evidence-based policy and strong Australian-based research and innovation into all rare diseases.

A Collaborative, Multi-Stakeholder Approach
The RARE Portal’s collaborative development is informed by a robust, extensive multi-stakeholder consultation approach to ensure the RARE Portal is accurate, credible, informative, inclusive, accessible, transparent, and responsive to the needs of the Australian rare disease sector.

All rare disease stakeholders are invited to help maintain the currency and accuracy of information on the RARE Portal. If you would like to contribute content or suggest a revision, please reach out to the RARE Portal team via the Contribute page.