FragileX
Canada
Connecting the Fragile X Community Across Canada
Fragile X Canada is a national health charity building a stronger future through connection, care, research, and awareness across the full Fragile X community.
Current
Projets
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.
Funding Announcement:
We’re excited to announce that this work is now funded through a CIHR Planning and Dissemination Grant, awarded in partnership with Holland Bloorview.
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.
A major milestone: Ethics approval is complete — and enrollment is now open.
This is your opportunity to help shape what comes next for the Fragile X community through research, insight, and lived experience.
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
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"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."
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"With Fragile X Canada’s support, our trial reached more families, building trust and participation that changed the trajectory of the study."
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"This community has expanded my network, strengthened my grants, and transformed how I share science in ways that truly matter."
Everyone has the Fragile X Gene
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