Rare Awareness Rare Education (RARE) Portal

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal 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 first nationally coordinated effort to address rare diseases in Australia.

The RARE Portal is a living website in ongoing development, with new information added regularly. Download the RARE Portal flyer. Feel free to distribute the flyer among your networks.

A look at the RARE Portal:

Click the ‘CC’ icon to see closed captions.

The RARE Portal:

  • Is a digital library of verified rare disease information, services and resources
  • Is customised for the Australian context
  • Caters for all stakeholders in the rare disease sector and the general public, with dedicated pages for the rare disease community, healthcare professionals and researchers
  • Is a living website that is responsive to feedback and new knowledge
  • Highlights strengths and gaps across the rare disease sector, which can inform policy and service development

What’s on the RARE Portal

  • General information about rare diseases
  • Information for all stakeholders in the rare disease sector
  • Services and resources available nationally and in specific states and territories
  • Rare disease information customised for Aboriginal and Torres Strait Islander people, people from culturally and linguistically diverse backgrounds and people living in regional, remote and rural areas
  • Individual disease pages developed together with RVA Partner organisations (disease-specific groups)
  • A-Z Support Directory of rare disease groups
  • Opportunities for stakeholders to provide ongoing input via a Contribute page

How the RARE Portal is being developed

The RARE Portal is informed by an extensive multi-stakeholder consultation process, led by RVA. Development of the RARE Portal has been funded by the Australian Government.

Ongoing 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, which is ongoing. 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 purposes 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.

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.

RARE Portal updates

RVA will circulate updates about the RARE Portal as it develops. Please fill out the form below if you’d like RVA to email you RARE Portal-related updates.