Building Sustainable Patient Involvement in Rare Condition Research.

Authors

Dani Bancroft, Natasha Ratcliffe, Amy Hunter

Published in

Molecular genetics & genomic medicine. Volume 14. Issue 10. Pages e70300.

Abstract

An overview of the structural and cultural barriers to patient and public involvement and engagement (PPIE) in academic research, which are amplified in rare condition research, with recommendations on how to address them and reflections from patient, researcher and funder perspectives.

PMID:
42834739
Bibliographic data and abstract were imported from PubMed on 06 Oct 2026.

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