FragileX

Canada

Building expertise.

Inspiring hope and possibility for

Current
Projets

2025 Canadian
Fragile X Conference

Connecting Fragile X:
Elevating with Maters in Research, Care & Community

The 2025 Fragile X Conference brings the Fragile X community together, examining science, building shared expertise and transforming isolation into collaboration. By uniting science, care, advocacy, and lived experience, this conference moves us from conversation to action, laying the foundation for lasting change.

James Lind Alliance
Priority Setting Partnership

Families, self-advocates, clinicians, researchers, and community members each hold pieces of the expertise and questions needed to advance Fragile X care. The James Lind Alliance PSP brings these voices together to co-create a shared set of priorities, ensuring future research reflects the real needs of our community and drives meaningful progress.

Fragile X Connect
A Canadian Registry

Fragile X Canada is building the first national registry to connect families, researchers, and clinicians, creating the data foundation needed to drive clinical trials, improve care, and advance research in Canada.

Fragile X ECHO
Extension for Community Healthcare Outcomes

A program designed to connect families, clinicians, and community members in case-based learning opportunities, expand expertise and improving care across Canada.

Real Stories, Real Impact

  • "For the first time, I felt seen and supported. I was connected with health professionals who finally understood my journey as a Fragile X carrier."

  • "With Fragile X Canada’s support, our trial reached more families, building trust and participation that changed the trajectory of the study."

  • "This community has expanded my network, strengthened my grants, and transformed how I share science in ways that truly matter."

Approximately

136,000 Canadians

are impacted by a mutation in the

Fragile X gene

Elevate 136K

Fragile X Canada is committed to easing the challenges for individuals, families, healthcare providers, and researchers by doing what we do best:

  • Expand expertise so that every person impacted by Fragile X, whether a parent, self-advocate, healthcare provider, researcher, or community member, has the knowledge and confidence to be an expert in their role.

  • Build community so no one navigating Fragile X feels alone.

  • Connect and centralize knowledge so that expertise is available across Canada.

Learn more about SHAPING THE FUTURE OF FRAGILE X

MISSION

To champion the Fragile X community through collaboration, research advancement, and advocacy for comprehensive care and support. Our mission is lead by building expertise, fostering safe spaces for open conversations, and empowering knowledge sharing across all levels of the community.

World Fragile X Day

July 22 is a day to raise awareness and shine a light on Fragile X Syndrome and associated conditions.
Join us in lighting up Canada and spreading awareness, because when we elevate visibility, we elevate support, research, and hope for the Fragile X community.

#FragileXSyndrome #WorldFragileXDay