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Updated: Oct 7, 2026

06:16
Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Building Sustainable Patient Involvement in Rare Condition Research
Dani Bancroft1, Natasha Ratcliffe2, Amy Hunter1,3
1Genetic Alliance UK, Bristol, UK.
Molecular Genetics & Genomic Medicine
|October 6, 2026
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.
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