RARE Portal Sneak Peek

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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 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 purpose of the RARE Portal sneak peek

The RARE Portal sneak peek is designed to provide all stakeholders in the rare disease sector with an update on the site’s development and the opportunity to provide input.

After completing this course, you will:

  • Have a better understanding of what the RARE Portal is and the multi-stakeholder consultation process RVA has undertaken to date
  • See the progress made on building and populating the site
  • Have the opportunity to provide feedback via a form