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:
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.
- The Medicare Benefits Schedule helps pay for patient care, including Chronic Disease Management plans.
- The Life Saving Drugs Program funds 14 different life-saving medicines for 9 very rare diseases, providing physical and financial relief for 400 Australian patients.
- The Pharmaceutical Benefits Scheme helps pay for medicines for rare diseases (sometimes called orphan drugs).
- The Therapeutic Goods Administration has an orphan drug program that waives application fees for new medicines to treat rare diseases.
- The Medical Research Future Fund and the National Health and Medical Research Council fund medical research into rare diseases, including:
- the Clinical Trials Activity initiative, which addresses rare cancers, rare diseases and unmet needs
See more chronic conditions resources.