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.
OUR MISSION
We exist to ensure that individuals with Rett Syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community
OUR VISION
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.
HOW WE HELP:
- Provide new members that are Canadian parents/guardians with a complimentary welcome package with valuable resources
- Assist with connecting new families to other local families and the Rett clinics
ONGOING SUPPORT
Fund and support Rett Syndrome Clinics in Ontario, Canada at: Thames Valley Children’s Centre in London and Holland Bloorview Kids Rehabilitation Hospital in Toronto
- Organize social events to gather our community together
- Create new initiatives for community engagement
Host conferences and symposiums for parent, caregivers, medical professional, scientists, and industry partners
Provide community updates via our website, social media and email
Partner with advocacy groups within and outside of Canada to secure support for our community
RESEARCH
Provide funding for Canadian research initiatives through the Hope Fund Grant
Sponsor the Canadian Rett Syndrome Registry
Fund the ongoing operational costs of the Canadian Rett Syndrome Registry
Advocate for clinical trials in Canada
Attend scientific meetings virtually and in-person
Connect with industry partners once a month
history of orsa Canada
Made in Canada:
Since its founding in 1991, ORSA Canada has been a steadfast advocate for individuals with Rett syndrome and their families across Canada.
The Canadian Rett Syndrome Registry
A cornerstone of ORSA Canada’s mission is the Canadian Rett Syndrome Registry, a nationwide database that collects clinical, genetic, and demographic information on individuals diagnosed with Rett syndrome. Established to advance research and improve patient care, the registry enables researchers and medical professionals to identify trends, develop targeted treatments, and connect families with specialized resources and clinical trials. By maintaining this invaluable database, we ensures that Canada remains at the forefront of Rett syndrome research and advocacy.
Pioneering Research and Support
In 2014, ORSA Canada launched The Hope Fund, a groundbreaking initiative dedicated to advancing Canadian Rett syndrome research. To date, the fund has awarded over $1 million to Canadian researchers committed to finding new insights and treatments for Rett syndrome.
A Global Leader in Advocacy
ORSA Canada has played a pivotal role in raising awareness and driving research efforts for Rett syndrome. We collaborates closely with medical professionals, researchers, and families to ensure individuals affected by Rett syndrome receive the best possible care and support.
In 2028, ORSA Canada will host the prestigious 10th Rett Syndrome World Congress in Toronto, Ontario bringing together experts, advocates, and families from around the world to drive further advancements in Rett syndrome treatment and support.
Community Engagement and Awareness
ORSA Canada hosts regular family conferences, bringing together individuals with Rett syndrome, their families, caregivers, and medical experts. These conferences provide a platform for sharing the latest research, treatment advancements, and practical strategies for managing Rett syndrome. They also foster a supportive community where families can connect, learn, and gain strength from one another.
Through initiatives such as “Light Canada Purple,” ORSA Canada raises awareness by encouraging landmarks across Canada to be illuminated in purple, the official color representing Rett syndrome. The organization also leverages digital platforms to engage with the community and share resources, ensuring that families and individuals receive ongoing education and support.
