RARE.Qc Impact Stories
RARE.Qc Impact Stories
In Charlevoix, Some Realities Are Invisible. They Are Lived. Rare Diseases Are One of Them.
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...
CAN-ACT Registry: Building Canada’s First National Registry for Heritable Thoracic Aortic Diseases
Written by Maria El Bizri, Knowledge and Community Mobilization Officer, Loeys-Dietz Syndrome Foundation Canada - Rare diseases often face a common challenge: a lack of coordinated data. For children and families living with heritable thoracic aortic diseases (HTAD), including Loeys-Dietz syndrome...
From Lebanon to Montreal: Discovering the Power of Collaboration in Rare Disease Research
Written by Daniel Charouf ---- As a pediatric neurologist trained in Lebanon, my journey into neurogenetics has been shaped by both challenge and opportunity. Moving to Montreal, Canada, to pursue a fellowship in pediatric neurogenetics has been a transformative experience....
Interested in sharing an impact story?
Highlight your projects, discoveries, initiatives, collaborations, or reflections related to rare diseases. We invite members of the RARE.Qc community to submit a short article written in accessible language to showcase their achievements, lessons learned, and the impact of their activities across the network and the rare disease community.