Rare Aware

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.

Please visit the About page for details on how information on the RARE Portal is being curated to ensure it is credible and reliable. More information and resources will be added to the site in time.

RARE Helpline

The RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. Visit the RARE Helpline page for more information.

Search Services – NATIONAL or by State/Territory:
AUSTRALIAN CAPITAL TERRITORY | NEW SOUTH WALES | NORTHERN TERRITORY | QUEENSLAND | SOUTH AUSTRALIA | TASMANIA | VICTORIA | WESTERN AUSTRALIA

Rare Disease Information pages:
About the RARE Portal | What Is A Rare Disease? | Commonly Used Terms | Importance of Early Diagnosis | Disability Support | Rare Disease Classifications

RARE DISEASE COMMUNITY

Information for the rare disease community, including people living with a rare disease, families, carers, rare disease organisation leaders and priority populations.

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HEALTHCARE PROFESSIONALS

Information for the rare disease workforce. Learn how to best support people living with a rare disease or undiagnosed rare disease and information about diagnostics.

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A-Z SUPPORT DIRECTORY

Find a rare disease organisation. Rare disease organisations provide support for people living with a rare disease and advocate for their community.

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RESEARCHERS

Information about research and data collection, involving people living with a rare disease in research, guides and resources, education and funding opportunities.

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