The Rare Awareness Rare Education (RARE) Portal is Australia’s growing national resource for rare diseases, housing an online library of current, reliable and straightforward rare disease information. It includes a comprehensive collection of national, state and territory based rare disease information, resources, services and supports relevant to all Australian rare disease stakeholders. The RARE Portal’s key point of difference is that it is being collaboratively developed and customised for the Australian context. It is a living website in ongoing development. More information, resources, and individual rare disease pages will continue to be added to the site over time.

The RARE Portal is one of the key deliverables 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.

Implementation 1.2.1.1 of the Action Plan is:¹

Develop and maintain an accessible multi-purpose digital repository to detail available care and support services and to provide general rare diseases information. The repository can be used to identify gaps and opportunities for improvement. Promote the repository to rare disease organisations, for distribution to people living with a rare disease, and their families and carers.

‘Multi-stakeholder involvement and engagement’ and ‘collaborative governance and leadership’ are critical enablers of the Action Plan, while ‘person-centred’ and ‘equity of access’ are foundation principles. These critical enablers and foundation principles will continue to inform the RARE Portal’s development.

Development of the RARE Portal has been funded by the Australian Government. 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.

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. This collaborative approach is led by Rare Voices Australia (RVA). RVA is the national peak body for Australians living with a rare disease, advocating for the best outcomes for Australians living with a rare disease. Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability.^2,3 One of RVA’s key strengths is our person-centred focus that sees us working with all key stakeholders, including Australians living with a rare disease, governments, key peak bodies, researchers, clinicians and industry. This multi-stakeholder approach extends to the collaborative development of the RARE Portal, ensuring a robust and extensive consultation process remains central to its ongoing development.

Since the Action Plan’s launch in 2020, RVA has engaged in an extensive multi-stakeholder consultation process to develop the RARE Portal. This includes:

• A broad multi-stakeholder consultation process, which includes rare disease organisations, RVA’s Scientific and Medical Advisory Committee, healthcare professionals, researchers. government agencies and industry
• Working with the Centre For Accessibility Australia (CFA) to ensure the site meets accessibility requirements as best as possible
• Liaising with and learning from other international rare disease organisations and initiatives
• Responding to the needs of Australians identified through RARE Portal contributions, RARE Helpline queries, working with government agencies, and RVA’s other work more broadly as the national peak body for Australians living with a rare disease

RVA thanks everyone who has contributed to the development of the RARE Portal to date, and we look forward to continuing this important work with the sector. We value the ongoing collaboration with rare disease organisation leaders, healthcare professionals, researchers, government agencies and lived experience experts who have all shown so much enthusiasm about the RARE Portal and a genuine willingness to work with RVA towards the best outcomes for Australians living with a rare disease.

For information on how you can contribute to the RARE Portal, please visit the RARE Portal’s Contribute page.

A RARE Portal social media pack is available for those who wish to share information about the RARE Portal with their family, friends, health professionals and networks.

Development of the RARE Portal is guided by a transparent and evidence-informed approach, underpinned by person-centred principles. Credible, high-quality information is drawn from peer-reviewed research, expert consensus, clinical guidelines, other established rare disease resources, and where relevant and appropriate, people with lived experience. The RARE Portal does not provide medical advice but is a central rare disease hub established to improve access to information.

The information, links and resources on the RARE Portal are curated via a methodical and purposeful process. This process enables the sharing of information that is up-to-date and from credible sources backed by well-respected experts or governments.

All resources and services listed on the RARE Portal are selected through a vetting process and must fulfil one or more of the following criteria:

• Government-led or government (either federal or state-based) initiatives
• Have received or are receiving government funding (either federal or state-based funding)
• Part of a well-established hospital, university or research institution
• Led, supported or endorsed by credible experts from relevant backgrounds (qualified medical practitioners or scientific and medical advisory committees)

The RARE Portal has a dedicated editorial team. RVA also leverages the expertise and lived experience from its entire staffing team and volunteers to develop resources for the RARE Portal. Read more on the RARE Portal editorial team page.

In line with the Action Plan, the RARE Portal is being collaboratively ‘developed by the rare disease sector, for the rare disease sector.’ The use of a single bird in the logo symbolises the coming together of all stakeholders with a unified voice to develop the RARE Portal. The colour palette remains in line with RVA’s branding as the national peak body for Australians living with a rare disease.