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.
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 | Rare Disease Classifications | Importance of Early Diagnosis | Information on Genetic Services | Disability Support | Personalised tools suitable for rare disease
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.
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.
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.
RESEARCHERS
Information about research and data collection, involving people living with a rare disease in research, guides and resources, education and funding opportunities.
