RARE Portal

The Rare Awareness Rare Education (RARE) Portal contains current, reliable and straightforward information and resources for all rare disease stakeholders customised for the Australian context. There are several ways you can use the RARE Portal. Search for services nationally or by state or territory, or search for individual rare diseases by entering a rare disease name in the search bar at the top of the page. You can also scroll down and click on the four key groups for stakeholder specific information and the A-Z Support Directory.

Rare Voices Australia, the national peak body for Australians living with a rare disease, is leading the collaborative development of the RARE Portal. The RARE Portal has been funded by the Australian Government and is a key deliverable of the National Strategic Action Plan for Rare Diseases.

RARE Helpline

Staffed by appropriately trained Rare Voices Australia (RVA) personnel*, the RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face.