What we’re doing about rare diseases

Rare diseases are life-threatening or chronically debilitating conditions that affect a small percentage of the population. Rare diseases are complex and often need special treatments. Find out what we’re doing to help affected Australians.

What are rare diseases?

In Australia, a disease is considered rare if it affects less than 5 in 10,000 people. There are more than 7,000 rare diseases that are life threatening or chronically debilitating. Around 8% of Australians (2 million people) live with a rare disease.

About 80% of rare diseases are genetic. Diagnosis can often take time because these conditions are complex and doctors do not see them often.

Examples of rare diseases include:

For more information on rare diseases and support organisations, see Rare Voices Australia.

What are we doing about rare diseases?

We are addressing rare diseases at a national level via our National Strategic Action Plan for Rare Diseases.

Several programs and initiatives support treatment and management of these conditions.

See more chronic conditions resources.

Last updated: 
11 March 2020

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