Ontario Rett Syndrome Association
ORSA is the largest RS organization in Canada. They encourage anyone affected by RS to become a member (it’s free). They host a conference every second year.
International Rett syndrome Foundation
“Our Mission: To accelerate full spectrum research to cure Rett syndrome and empower families with information, knowledge and connectivity.”
Girl Power 2 Cure
Founded in 2006, Girl Power 2 Cure is a dedicated and vibrant nonprofit organization leading a movement to end Rett Syndrome, a severe neurological disorder that primarily affects girls but does affect boys as well. We are here to respond to the urgent need for support, education, mainstream awareness and treatments.
Canadian Rett Syndrome Registry
This registry will serve to improve the quality of life of people affected by Rett Syndrome by enabling research into new and improved treatments and by promoting up-to-date and consistent care across Canada.