RARE
DISEASE
DAY 2026
Saturday February 28, 2026
Fragile X syndrome may be rare in diagnosis
Together we can make Fragile X
Common in knowledge I Easier to understand I Easier to navigate I Easier to support
FragileX Connect
A Canadian Research Registry
Helps build a clearer national picture of Fragile X so knowledge, research, and care can reflect real life in Canada.
ONE PERSON TO JOIN THE REGISTRY
FragileX Connect
A Canadian Research Registry
The more people represented, the stronger the shared understanding and the harder it is for Fragile X to be overlooked.
Volunteers help turn knowledge into action. Resources, programs, and supports can reach more families, clinicians and researchers.
Your lived expertise can become a shortcut for someone else, turning hard-won learning into common knowledge.
FOLLOW
& SHARE
Every share helps our community recognize Fragile X, grow understanding, and build “common knowledge” beyond the community.
START
CONVERSATIONS
A single conversation can change what someone understands, what they notice, and where they look for support.
When good tools are shared, they become easier to find and knowledge becomes more accessible for everyone.
Connection turns lived experience into shared knowledge so fewer people have to figure things out alone. Join us for online sessions , you don’ t need to navigate Fragile X alone
Your lived expertise can become a shortcut for someone else, turning hard-won learning into common knowledge.