Shaping
the Future
At FragileX Canada, we are dedicated to driving meaningful change through strategic initiatives that foster understanding, support, and research for Fragile X Syndrome. Our three core priorities are designed to create lasting impact for individuals, families, and the broader community.
Our Three Core Priorities
Establishing a
Fragile X ECHO Program
We are building a specialized ECHO (Extension for Community Healthcare Outcomes) program to connect healthcare providers, researchers, and families with global expertise in Fragile X Syndrome. This initiative will:
Provide specialized training and mentorship to medical professionals across Canada.
Improve access to expert care and best practices, regardless of location.
Strengthen collaboration among healthcare providers, researchers, and families to enhance understanding and treatment strategies.
Creating a National Fragile X Registry
We are establishing a national registry to bridge the gap
between families and cutting-edge research. This initiative will:
Connect families with clinical trials and research opportunities in Canada and beyond.
Help researchers and healthcare professionals better understand the full spectrum of Fragile X across different ages and life stages.
Support advocacy efforts by providing data-driven insights to shape policies and improve services.
Launching a Fragile X Conference in Canada
We are leading the development of Canada’s first dedicated Fragile X conference, bringing together researchers, clinicians, and families to advance knowledge and collaboration. This initiative will:
Provide a national platform for sharing research breakthroughs and real-world experiences.
Strengthen partnerships between scientists, healthcare providers, and families to drive impactful change.
Showcase Canada’s growing role in Fragile X research and advocacy on a global stage.
Together, these three priorities reflect our commitment to empowering families, advancing research, and improving care for the Fragile X community in Canada and beyond.
Partnerships and Collaborations
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The CPHI will build Canada’s largest-ever collection of human genomic data—more than 100,000 genomes representing the diversity of Canada’s population.
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Enhance health care options for all Canadians.
Enabling more precise, personalized, predictive, preventative and cost-effective healthcare options (“precision health”) for Canadians.Drive economic growth.
Empowering Canadian scientists and companies to accelerate development of world-leading, next-generation health solutions and clean economic growth.Strengthen health security and data sovereignty.
Increasing access to Canadian genomic data needed to combat major public health threats, including pandemics.
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PaCer
Mission
PaCER builds capacity in health research for patients and communities to be meaningfully and actively engaged in the health research that informs health care planning, practice and policy.
Vision
PaCER’s vision is to lead patient-led training and peer-to-peer research that provides evidence to transform the health care system to improve health in all communities.
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PaCER is a three-course certificate program delivered by University of Calgary Continuing Education with support and academic oversight provided by the Alberta SPOR SUPPORT Unit Patient Engagement Team. Throughout the 12-month experience-based program, patient and community members learn how to develop, design and conduct qualitative health research projects about topics that matter to them.
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To understand the unique and diverse worlds of people on the autism spectrum and support their health through genomics across research, clinical care, education, and community engagement.
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Through our partnership with Prisma Precision Medicine, we’re advancing autism research by sharing knowledge, building connections, and fostering a community where science and lived experience come together to drive meaningful change.