Group intervention programs and their impact on well-being and quality-of-life for adults living with a rare or orphan disease - realist review of literature.
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DOI: 10.1080/09638288.2022.2104943
Abstract: PURPOSE Adults living with a rare or orphan diseases (ROD) experience common psychosocial difficulties that are often poorly addressed in usual care. This realist literature review aims to inform the development, evaluation and implementation of… read more here.
Keywords: living rare; review; rare orphan; group ... See more keywords
Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays
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DOI: 10.1186/s13023-017-0622-4
Abstract: BackgroundChildren 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… read more here.
Keywords: living rare; diagnosis; rare diseases; disease ... See more keywords