“You get left behind and lost in a complex world of rare care”: equity in access to rare disease care—learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

Australia is a high-income country, yet the 1 in 12 Australians living with any of the over 8000 rare diseases face significant health inequities.1,2 These inequities are intrinsically linked to each condition’s rarity, which limits recognition, optimal holistic care, and critically needed research and innovation.2,3 Rare diseases are the biggest killer of children, causing around 60% of childhood deaths.2,4 People living with rare disease (PLWRD) have more avoidable and prolonged hospitalisations and emergency department attendances compared to people with more common chronic conditions.