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The diagnostic odyssey: insights from parents of children living with an undiagnosed condition

18 Jun 2022

Abstract excerpt

BACKGROUND: People living with rare disease often have protracted journeys towards diagnosis. In the last decade, programs have arisen around the world that are dedicated to ending this 'diagnostic odyssey', including the Undiagnosed Diseases Program Western Australia (UDP-WA), which has a focus on finding diagnoses for children and young adults. To explore the lived experience of the diagnostic journey...

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PMID: 35717227
DOI: 10.1186/s13023-022-02358-x

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