About the Rare Awareness Rare Education (RARE) Portal

Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal for rare diseases. 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. One of RVA’s key strengths is our person-centred focus that sees us working with all key stakeholders, including 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.

The RARE Portal and the National Strategic Action Plan for Rare Diseases

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 of the Action Plan is:

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.

What is the RARE Portal?

The RARE Portal contains current, reliable and straightforward information and resources for all rare disease stakeholders. More information and resources will continue to be added to the site in time. The RARE Portal’s key points of difference are that it’s customised for the Australian context, and its development is informed by a robust, extensive multi-stakeholder consultation, led by RVA.

Development of the RARE Portal has been funded by the Australian Government. The RARE Portal seeks to highlight the gaps and strengths 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. See how you can contribute here.

RARE Portal multi-stakeholder consultation process to date

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 broader multi-stakeholder consultation process, which includes all RVA Partner organisations, RVA’s Scientific and Medical Advisory Committee and industry  
  • A state government for initial input on the RARE Portal to ensure it can align with and encompass state-based initiatives and resources
  • The Centre For Accessibility Australia (CFA) to ensure the portal meets accessibility requirements as best as possible
  • Liaising with and learning from Genetic and Rare Diseases (GARD) Information Center, based in the United States of America, throughout the project. The RARE Portal utilises GARD content where appropriate and relevant.
  • A RARE Portal update that was presented to attendees and key stakeholders in the rare disease sector (rare disease support organisation leaders; people living with a rare disease; governments; key peak bodies; clinicians; researchers; and the pharmaceutical industry) at the National Rare Disease Summit in November 2022
  • Launched a RARE Portal Sneak Peek in December 2022 alongside a survey to gain further input
  • Soft launched the site at RVA’s Rare Disease Day Parliamentary Event in March 2023

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 especially thank RVA Partner organisation leaders who have 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.

Selection of resources and services listed on the RARE Portal

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 current, up-to-date, active 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)

RARE Portal logo

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 portal. The colour palette remains in line with RVA’s branding as the national peak body for Australians living with a rare disease.