FRAGILEX
CONNECT
A Canadian research registry
Every number represents a person, a family, and a story. FragileX Connect is Canada’s national registry designed to bring this valuable information together, to help us better understand who is impacted, where they are, and what supports they need. By sharing a few details, you are helping improve care, advance research, and shape policies that matter.
Approximately 136,000 Canadians are impacted by the Fragile X mutation.
Be Counted
Be Connected
Be Part of the Future
FragileX Connect brings together families, researchers, and clinicians to build a clearer picture of Fragile X in Canada.
With Dr. David Hampson and the University of Toronto, we’re collecting information that guides research, improves care, and strengthens supports across the country.
Why Participate in the Fragile X Registry?
Help Improve Care
Your story helps researchers, clinicians, and policymakers understand what’s needed to improve diagnosis, care, and support across Canada.
Drive Research Forward
The information you share contributes to real-world insights and fuels meaningful research and future discoveries.
Be Counted
By participating, you make visible the impact of Fragile X in Canada, helping ensure better resources, funding, and recognition.
Shape the Future
Join a growing community working together to build a brighter future for individuals and families living with Fragile X.
Safe, Secure, and Family-Led
Your data is stored securely and your participation is always voluntary. Fragile X Canada and trusted academic leaders ensure your voice is respected and protected.
REGISTER TO BE A PART OF
FRAGILEX CONNECT
A Canadian Research Registry