Written by Céleste Paré, Student Researcher, Marjolaine Tremblay, and Isabelle Lessard, Researchers at the ÉCOBES-Recherche et transfert Centre, Cégep de Jonquière.
Photo (Charle)Voix: Shedding Light on Rare Diseases is a research project led by the ÉCOBES-Recherche et transfert Centre and the Centre d’études collégiales en Charlevoix (CECC). The project has two objectives: to better understand the experiences of people living with rare diseases in a remote, low-population-density region and to raise public awareness of these realities through a photographic exhibition.
A Photovoice methodology was conducted with nine individuals living with a rare disease or acting as caregivers. Participants were recruited through Envol Charlevoix, a project partner specializing in services for individuals with physical disabilities. Through semi-structured interviews, participants shared their experiences related to their condition. They were then paired with photographers from the Charlevoix CLIC Photography Club to visually convey the messages they wished to share with the public. This collaboration led to the creation of the travelling photo exhibition “Rare, ici ”, featuring 18 photographs that highlight six emerging themes: ongoing constraints, the desire for normalcy, therapeutic limitations, misunderstanding and misconceptions, social relationships, and resilience.
The exhibition opening took place at the CECC on April 22, 2026, attracting a diverse audience and media representatives. The exhibition will remain on display throughout the summer at the Clermont Library before moving to Le Plateau High School in La Malbaie in the fall of 2026. Additional venues will be added in the coming months. Beyond the exhibition itself, the photographs will also be used by Envol Charlevoix as awareness-raising and outreach tools. Individuals interested in following the exhibition’s journey are encouraged to follow the organization on social media for updates.
Project Team:
- Isabelle Lessard, Researcher, ÉCOBES-Recherche et transfert Centre, Cégep de Jonquière (RARE.Qc member)
- Marjolaine Tremblay, Researcher, ÉCOBES-Recherche et transfert Centre, Cégep de Jonquière (RARE.Qc member)
- Geneviève Laurin, Professor-Researcher, Centre d’études collégiales en Charlevoix (CECC)
- Jean-Guillaume Simard, Professor-Researcher, ÉCOBES-Recherche et transfert, Cégep de Jonquière
- Céleste Paré, Student Researcher, ÉCOBES-Recherche et transfert Centre, Cégep de Jonquière
- Sylvie Breton, Executive Director, Envol Charlevoix
- Valérie Rochefort, Specialized Educator, Envol Charlevoix
- Roxanne Houde, Specialized Educator, Envol Charlevoix
For more information about the project, please contact Isabelle Lessard at isabellelessard@cegepjonquiere.ca or Marjolaine Tremblay at marjolainetremblay@cegepjonquiere.ca.
For more information about the work of the ÉCOBES-Recherche et transfert Centre, please visit their website, Facebook page, or LinkedIn page.