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

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 policy respo...

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Detalhes bibliográficos
Publicado no:Orphanet J Rare Dis
Main Authors: Zurynski, Yvonne, Deverell, Marie, Dalkeith, Troy, Johnson, Sandra, Christodoulou, John, Leonard, Helen, Elliott, Elizabeth J
Formato: Artigo
Idioma:Inglês
Publicado em: BioMed Central 2017
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Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC5387276/
https://ncbi.nlm.nih.gov/pubmed/28399928
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-017-0622-4
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