Launched: Rare Awareness Rare Education (RARE) Portal

RVA News

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

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. Read more about the multi-stakeholder consultation process to date.

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.