Category: RARE.Qc Impact Stories

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…