A precision public health approach to improving rare disease diagnosis and care for aboriginal people, the first 15 years

Abstract

Rare diseases represent a significant and growing public healthcare challenge and are often the spotlight for innovation and progress. However the care of all individuals living with rare diseases is often inequitable. In Australia there are an estimated 50,000 Aboriginal people living with a rare disease, with access to appropriate services often inconsistent. This article aims to highlight the first 15 years of coordinated state-wide approaches to improving the diagnosis and care of Aboriginal people living with rare diseases in Western Australia (WA). As part of this we aim to highlight the numerous key moments and interventions that have been pivotal in shaping rare disease care for Aboriginal Western Australians. This includes key partnership to national and international initiatives that have been implemented. We also aim to outline areas of innovation and further work as we continue to strive to improve the care of Aboriginal people living with rare diseases.