Fragile X Canada

Fragile X Canada is a Canadian nonprofit organization dedicated to supporting individuals, families, and communities affected by Fragile X syndrome. The organization focuses on expanding expertise, building community, and connecting and centralizing knowledge to improve understanding and support for Fragile X syndrome across Canada.

Mission and Objectives

Fragile X Canada aims to empower individuals impacted by Fragile X syndrome, ensuring they have access to expertise, support, and a future filled with possibilities. It seeks to unite voices, drive real change in care, research, and advocacy, and make significant improvements in how Fragile X is understood and supported nationwide.

Initiatives

• Elevate 136K Campaign: This campaign aims to recognize, empower, and uplift the approximately 136,000 people impacted by Fragile X in Canada, ensuring they are seen, heard, and supported.
• Fragile X ECHO Program: Establishing a specialized ECHO program to connect healthcare providers, researchers, and families with global expertise in Fragile X syndrome. This initiative provides specialized training and mentorship to medical professionals and improves access to expert care.
• National Fragile X Registry: Creating a national registry to connect families with clinical trials and research opportunities, helping researchers better understand the full spectrum of Fragile X across different ages and life stages.
• Fragile X Conference: Organizing Canada's first dedicated Fragile X conference to advance knowledge, strengthen partnerships between scientists, healthcare providers, and families, and showcase Canada's role in global Fragile X research and advocacy.

Impact

Fragile X Canada plays a crucial role in addressing the challenges faced by individuals with Fragile X syndrome and their families. Through its initiatives, it fosters collaboration, advances research, and improves care standards, ultimately transforming the landscape of Fragile X support in Canada.