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

Patient and Public Involvement in Research (21) Ethics, Privacy, and Legal Issues (548) Patient Engagement and Empowerment (51) Participatory Medicine & E-Patients (829) Clinical Information and Decision Making (1647) E-Health / Health Services Research and New Models of Care (609)

Published on in Vol 15 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/46607, first published .
An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach

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 (2) Tweetations (6) Metrics

Journals

  1. Belančić A, Gkrinia E, Likić R, Vitezić D. Navigating challenges and opportunities in orphan medicines: A spotlight commentary on rare diseases. British Journal of Clinical Pharmacology 2025;91(4):1084 View
  2. Dwyer A, Somanadhan S. Nursing’s Role in Advancing Care for Rare Genetic Diseases. Nursing Clinics of North America 2025;60(2):349 View