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This paper is in the following e-collection/theme issue:

Patient and Public Involvement in Research (54) Ethics, Privacy, and Legal Issues (685) Participatory Medicine & E-Patients (909) Clinical Information and Decision Making (2157) E-Health / Health Services Research and New Models of Care (829) Patient Engagement and Empowerment (144)

Published on in Vol 15 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/46607, first published .
Doctor in white coat uses tablet, stethoscope around neck

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

Authors of this article:

Ariane Quintal1, 2, 3 Author Orcid Image ;   Isabelle Carreau3 Author Orcid Image ;   Annie-Danielle Grenier3 Author Orcid Image ;   Caroline Hébert3 Author Orcid Image ;   Christine Yergeau3, 4 Author Orcid Image ;   Yves Berthiaume3, 5 Author Orcid Image ;   Eric Racine1, 2, 3, 5, 6, 7 Author Orcid Image
Article Authors Cited by (7) Tweetations (6) Metrics

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  4. Monaci M, Romão M, Bigi S, Credi B, Korenjak M, Barello S. “About the patient, not for the patient”: A qualitative study on medical reports in hepatology. Patient Education and Counseling 2026;142:109363 View
  5. Liu Z, Wu Y, Li S. Facilitators and barriers to healthcare services among patients with Atypical Hemolytic-Uremic Syndrome: a qualitative study. Humanities and Social Sciences Communications 2025;12(1) View
  6. Yamada D, Komoto T, Lima V, Souza J, Seixas M, Cassão V, Ferraz V, de Oliveira B, Félix T, Alves D. Main Recommendations for Developing Educational and Awareness Strategies in the Context of Rare Diseases: A Scoping Review (Preprint). JMIR Medical Education 2025 View

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  1. Cardoso M, Martiniano H, Mota-Vieira L, Vicente A. Omics Approaches in Biomedicine and Biotechnology. View