The Ontario Rett Syndrome Association of Canada (ORSA Canada) is a volunteer-driven, non-profit charity dedicated to supporting parents, caregivers, researchers, medical professionals, and other stakeholders. ORSA Canada provides essential resources and advocacy for individuals with Rett syndrome and their families across Canada.
We exists to ensure that individuals with Rett Syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community.
To create a world where every individual affected by Rett Syndrome has access to compassionate care, cutting-edge research, and unwavering support, empowering them and their families to thrive.
Proudly serving approximately 900 Canadians living with Rett Syndrome.
Rett syndrome (RTT) is a rare genetic neurodevelopmental disorder that occurs almost exclusively in females; even rarer in males. It is estimated that 1 in 10,000 are affected by RTT, usually caused by a mutation of the MECP2 gene on the X chromosome. It leads to severe impairments, affecting nearly every aspect of the individual’s life: their ability to speak, walk, eat, and even breathe easily. Other medical issues encountered included seizures, muscle stiffness, osteoporosis and scoliosis. The hallmark of RTT is near constant repetitive hand movements. RTT is usually recognized in children between 6-18 months as they begin to miss developmental milestones or lose abilities they had gained also known as regression. RTT is not a degenerative disease. Many individuals with RTT live long into adulthood. There is currently no cure however, medical advancements are being made on medication to help with symptom control.
