For the 2 million Australians living with rare diseases, access to medicines can be inadequate. This report reassesses 2014 research by the McKell Institute, assessing the state of rare disease therapies in Australia.

Many Australians with rare diseases aren’t receiving the treatment they deserve. This report uses comprehensive survey data gathered from Australians with rare diseases, and their carers, to identify gaps in treatment and outline how services, including the NDIS, can deliver better health outcomes.