2025 CANADIAN FRAGILE X CONFERENCE

Connecting Fragile X

Elevating What Matters in Research, Care & Community

A Different Kind of Conference ~ Where Everyone Has a Seat at the Table

This isn't just another scientific meeting or family workshop, it's a full community experience that brings families, researchers, clinicians, industry partners, advocates, and the entire community together to drive real change in Fragile X.

FAMILIES & ADVOCATES I RESEARCHERS I CLINICIANS I INDUSTRY PARTNERS I POLICY LEADERS

2-Day Draft Agenda

coming soon

Here is what you can expect

  • Join thought-provoking keynotes, interactive sessions, and honest conversations that move beyond the status quo, exploring what's working, what's not, and how we move forward together.

  • Every session is designed to include diverse voices: families, clinicians, researchers, industry partners, advocates and more, collaborating in real time. Expect dialogue, not just lectures.

  • Dive into the latest science, explore how it connects to real-world care, and leave with tools you can use whether you're in a clinic, a lab, a classroom, or at home.

  • Be inspired by leaders like:

    • Keith McArthur, GRIN1 parent & Executive Director of CureGRIN, sharing his journey of discovery, advocacy, and mobilizing a global community.

    • Dr. Peter Rosenbaum, Officer of the Order of Canada and co-founder of CanChild, bringing decades of insight into functioning and family-centred care.

  • Take part in honest discussions about clinical trials, adulthood, medications, funding, and the future of Fragile X research and care in Canada.

  • Explore the launch of Canada’s first Fragile X Registry, learn about research and clinical networks, and see how your voice can help shape what's next.

  • Two full days of content with breakfast, lunch, coffee breaks, and lots of opportunities to connect with others who get it.

Connecting Fragile X: Prioritizing What Matters in Research, Care & Community

is a first-of-its-kind national gathering designed to unite families, researchers, and healthcare professionals across Canada to drive meaningful progress in Fragile X syndrome and related conditions.

In a country as vast and diverse as Canada, critical work in research, clinical care, and family support often occurs in isolation. This conference seeks to bridge these divides by fostering interdisciplinary collaboration and centring the voices of those most directly affected. Through real-world storytelling, scientific dialogue, and knowledge exchange, we aim to spark new partnerships, amplify awareness, and ensure that everyone in the Fragile X community, from individuals to families, researchers, clinicians, educators and advocates working to advance Fragile X care and science

Elevate Knowledge and Awareness
Share cutting-edge research, clinical practices, and lived experiences to increase understanding of Fragile X syndrome and related disorders among professionals and families.

Build Capacity Through Education and Skill Development
Equip attendees with practical skills in caregiving, communication, advocacy, and patient-centred research through interactive workshops and training.

Advance Collaboration and Community Connections
Strengthen interdisciplinary networks and foster lasting relationships across research, clinical care, and family communities.

Empower Families and Amplify Advocacy
Center family voices in research, care, and advocacy by creating inclusive spaces for leadership, conversations, and input.

Translate Research into Action
Bridge the gap between scientific discovery and everyday application, promoting research that improves real-world outcomes.

Ensure Inclusion, Accessibility, and Long-Term Impact
Design an inclusive conference experience and extend its impact through evaluation and continued engagement.