RARE.Qc Impact Stories
RARE.Qc Impact Stories
Advancing Rare Disease Research: The Importance of Working Together
Written by Sonia Gobeil, Cofounder and Valérie Deraiche, Communications and Program Director at the Ataxia Charlevoix-Saguenay Foundation - How can we advance research...
2025 Rare Disease Bike Tour
Written by Ryan Hull, RARE.Qc Student member - A single rare disease affects fewer than 1 in 2,000 people by definition, but together they affect nearly 700,000 Quebecers. Because of how rare their cases are, patients...
1 in 12 Canadians. Zero Hours of Training.
Written by Leah Sarah Peer, Peer Medical Foundation | RARE.Qc EDI Committee - Rare diseases affect an estimated 300 million people worldwide and 1 in 12 Canadians (Lancet Global Health, 2024). And yet, in country after country...
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...
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...
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...
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.