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...

Täydet tiedot

Tallennettuna:
Bibliografiset tiedot
Julkaisussa:Orphanet J Rare Dis
Päätekijät: Zurynski, Yvonne, Deverell, Marie, Dalkeith, Troy, Johnson, Sandra, Christodoulou, John, Leonard, Helen, Elliott, Elizabeth J
Aineistotyyppi: Artigo
Kieli:Inglês
Julkaistu: BioMed Central 2017
Aiheet:
Research
Linkit: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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