Grant: Operating Grant: Knowledge Synthesis Grants: Allied Health and Genetics

Genetic testing is becoming more common, helping diagnose rare and inherited conditions earlier and more accurately than ever before. But our health and care systems haven't caught up. It's like giving someone a car but forgetting to build the gas stations, put up road signs, or explain how to drive. Families often receive complex genetic information without the follow-up support, tools, or services they need. As well, the professionals who support them, nurses, therapists, counsellors, aren't always trained to help navigate what these results mean in everyday life. GeneXchange is a project designed to help close this gap. It focuses on Fragile X Syndrome, a condition that affects learning, behaviour, mental health, fertility, and aging. Because it impacts multiple areas of life and spans generations within families, Fragile X highlights many of the challenges people face when trying to use genetic information in the real world. The goal is to improve how this information is shared, understood, and acted on across someone's whole life. GeneXchange will work closely with families and allied health professionals across Canada, genetic counsellors, speech therapists, nurses, to understand what's working, what's missing, and what tools are needed. Together, we'll co-create practical resources such as care maps, referral tools, and visual guides to make it easier to understand and use genetic information. This project aims to ensure that families, regardless of where they live or what condition they have, receive the right information, at the right time, with the support they need. It will also help shape national strategies for delivering genetic results in ways that are clear, compassionate, and connected to real-world care.