“La force du rare”: Exploring Strategies to Improve Care for People Living with Rare Diseases

Research Team

Eric Racine, PhD (Pragmatic Health Ethics Research Unit, Université de Montréal), Annie-Danielle Grenier (Rare Disease Communicator, Patient Partner), Isabelle Carreau (Patient Partner), Bénédicte D’Anjou (Pragmatic Health Ethics Research Unit).

 

Funding

Ministère de la Santé et des Services Sociaux, Québec

 

Abstract

Due to their low prevalence, rare diseases remain poorly understood by healthcare professionals and are insufficiently addressed in medical training and clinical guidelines. This situation can lead to skepticism, stigma, and distress among people living with rare diseases. To address these challenges, our multidisciplinary team of patient partners and researchers developed “La force du rare” (The Strength of the Rare), a virtual participatory workshop designed to raise awareness about the realities of rare diseases, stigma, and partnership in care. Supported by the Quebec Ministry of Health and Social Services, the project aims to scale up the delivery of this workshop, evaluate its impact, and document emerging avenues for action.

Developed through a co-creation process involving researchers, patient partners, and healthcare professionals, the 60-minute workshop promotes co-learning through research findings, personal testimonials, and group discussions. Its evaluation is based on observations and anonymous questionnaires.

 

References
  1. Quintal A, Hotte É, Hébert C, Carreau I, Grenier AD, Berthiaume Y, Racine E. Understanding rare disease experiences through the concept of morally problematic situations. HEC Forum. 2024;36(3):441-478. Read the article.
  1. Quintal A, Hébert C, Grenier AD, Carreau I, Berthiaume Y, Racine E. Morally problematic situations encountered by adults living with rare diseases. AJOB Empirical Bioethics. 2023; (15)3:192-2053. Read the article.
  2. Quintal A, Carreau I, Grenier AD, Hébert C, Yergeau C, Berthiaume Y, Racine E. An ethics action plan for rare disease care developed through participatory action research. J Particip Med. Read the article.