Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

Abstract Background Children and families living with rare disease often experience significant health, psychosocial, economic burdens and diagnostic delays. Experiences appear to be constant, regardless of the specific rare disease diagnosis. Systematically collected Australian data to support poli...

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Bibliographic Details
Main Authors: Yvonne Zurynski, Marie Deverell, Troy Dalkeith, Sandra Johnson, John Christodoulou, Helen Leonard, Elizabeth J Elliott, APSU Rare Diseases Impacts on Families Study group
Format: Article
Language:English
Published: BMC 2017-04-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Child
Families
Diagnosis
Diagnostic delays
Experiences
Online Access:http://link.springer.com/article/10.1186/s13023-017-0622-4

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