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Lived experiences in rare genetic diseases: a narrative synthesis of 317 qualitative studies (2004–2024)

Crossref DOI link: https://doi.org/10.1038/s41431-026-02201-y

Published Online: 2026-07-29

Update policy: https://doi.org/10.1007/springer_crossmark_policy

Authors

Gush, Marianne https://orcid.org/0000-0001-6293-4253
Moosa, Shahida https://orcid.org/0000-0002-4463-3067
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Text and Data Mining valid from 2026-07-29

Version of Record valid from 2026-07-29
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Article History

Received: 12 November 2025

Revised: 8 July 2026

Accepted: 13 July 2026

First Online: 29 July 2026

Ethics

Competing interests: The authors declare no competing interests.