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Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support
BACKGROUND: Families of children living with a rare disease report significant health and social burden, however, few studies have systematically examined family needs by using validated tools to assess the scope and extent of this burden. Our aim was to develop a comprehensive survey to assess heal...
| Autores principales: | , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
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BioMed Central
2013
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| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3599672/ https://www.ncbi.nlm.nih.gov/pubmed/23398775 http://dx.doi.org/10.1186/1750-1172-8-22 |