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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Detalles Bibliográficos
Autores principales: Zurynski, Yvonne, Deverell, Marie, Dalkeith, Troy, Johnson, Sandra, Christodoulou, John, Leonard, Helen, Elliott, Elizabeth J
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5387276/
https://www.ncbi.nlm.nih.gov/pubmed/28399928
http://dx.doi.org/10.1186/s13023-017-0622-4

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