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Parents' Experiences of Navigating Diagnostic Uncertainty in Children With Rare Diseases: A Narrative Inquiry

2026-02-15 oncology Title + abstract only
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BackgroundApproximately 300 million people worldwide live with a rare disease, and the majority of rare diseases manifest in childhood. For families, the period before diagnosis is often protracted and distressing, marked by repeated consultations, inconclusive investigations, conflicting medical opinions, and the absence of a recognisable name for their childs condition. While the clinical and epidemiological dimensions of the diagnostic odyssey have been documented, the narrative and experient...

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