This report examines the current state of Australia’s rare disease policy landscape, identifying policy gaps, and provides eight recommendations aimed at ensuring all Australians living with a rare disease experience health equity. While each disease may be ‘rare’, collectively, rare diseases affect up to 8% of the Australian population.

The report outlines key findings for Australia from the first international survey of health outcomes and experiences of patients living with chronic conditions who are treated in GP practices. It summarises data findings across 10 health areas and outlines key insights for improving the quality of care for people living with chronic conditions.

Despite the severity of motor neurone disease (MND), people with MND face a fragmented and inequitable system of care. A major driver of inequity is an age-based divide in funding. This report aims to guide policy decisions that enhance care, support and quality of life for people living with this condition and their carers.

Hypophosphatasia (HPP) is a genetic, multisystem condition that impairs the body’s ability to properly mineralise bones and teeth. Through the lens of HPP, this report illustrates how Australia’s healthcare system remains unfit for people with rare diseases. It presents a clear case for targeted, achievable reforms to improve diagnosis, treatment access and care coordination for...

This scoping review sought to identify the enablers and barriers to patient enrolment in primary care and the impact of enrolment on continuity and quality of care. The paper finds the characteristics of patient enrolment models differ greatly in both form and implementation and enrolment had little impact on continuity of care; but enrolment can...