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Living with a rare disease: Why lived experience must shape research.

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Title: Living with a rare disease: Why lived experience must shape research.
Authors: Whyatt G; Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom., Whitehouse J; Caring Matters Now, St Ives, United Kingdom.
Source: PLoS medicine [PLoS Med] 2026 Sep 18; Vol. 23 (9), pp. e1005253. Date of Electronic Publication: 2026 Sep 18 (Print Publication: 2026).
Publication Type: Journal Article
Journal Info: Publisher: Public Library of Science Country of Publication: United States NLM ID: 101231360 Publication Model: eCollection Cited Medium: Internet ISSN: 1549-1676 (Electronic) Linking ISSN: 15491277 NLM ISO Abbreviation: PLoS Med Subsets: MEDLINE
Database: MEDLINE Ultimate
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ISSN:1549-1676
DOI:10.1371/journal.pmed.1005253