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

Patient and Public Involvement in Research (25) Ethics, Privacy, and Legal Issues (569) Patient Engagement and Empowerment (62) Participatory Medicine & E-Patients (841) Clinical Information and Decision Making (1736) E-Health / Health Services Research and New Models of Care (637)

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
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JMIR Publications JMIR Publications @jmirpub

J Participatory Med: An Ethics Action Plan for Rare Disease Care: #participatory Action Research Approach https://t.co/0k5PDOosV1 https://t.co/VU7ouRdeyP

3:59 PM · Nov 23, 2023

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Journal of Participatory Medicine Journal of Participatory Medicine @JMIR_JoPM

RT @jmirpub: J Participatory Med: An Ethics Action Plan for Rare Disease Care: #participatory Action Research Approach https://t.co/0k5PDOo…

3:59 PM · Nov 23, 2023

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John Novack John Novack @J2Novack

An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach https://t.co/HAWO8rc8C4 @s4pm

5:05 PM · Nov 23, 2023

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Daniel Z. Sands, MD, MPH Daniel Z. Sands, MD, MPH @DrDannySands

New paper in JoPM: An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach https://t.co/PnV8PfaxDt @S4PM

5:05 PM · Nov 23, 2023

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Ma vie de zèbre • A-Danielle G. ???? Ma vie de zèbre • A-Danielle G. ???? @ADanGrenier

2e article d'un super projet: "An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach" On travaille à une suite de ce plan... détails sous peu! #bioethics #publication #RareDisease #MaladiesRares #PartenariatPatient https://t.co/XUTRltVLN3

3:04 PM · Nov 24, 2023

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Julie Babyar Julie Babyar @juliebabyar

Patient-rated autonomy can improve. Structure to improvement is highlighted in articles like this: https://t.co/9wHs2Far2T Healthcare could improve rare disease autonomy training @ahahospitals Consistent, shared messaging would be best.

3:28 PM · Oct 13, 2024

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