Ensure timely, managed access to Daybue for Canadians with Rett Syndrome
Ensure timely, managed access to Daybue for Canadians with Rett Syndrome
The Issue
Canadians living with Rett syndrome now have an approved therapy. Daybue (trofinetide) is the first and only Health Canada approved treatment that addresses the core symptoms of this devastating neurodevelopmental condition. Yet, despite federal approval, most Canadians with Rett syndrome cannot access it.
Today, only a small number of families in Canada have been able to obtain Daybue, often through exceptional circumstances, private means, or limited compassionate pathways. This has created a profound disparity in health equity within our country. While some individuals have the chance to improve their quality of life, many others are left to face significant unmet medical needs.
Rett syndrome is a rare and life-altering disorder that severely impacts individuals and their families. The condition is characterized by a relentless progression of physical and mental challenges, including loss of speech, motor skills, and the ability to perform basic functions. It affects almost every aspect of daily life.
Clinical trials and real-world evidence have demonstrated that Daybue can provide significant benefits, including the reduction of the burden of certain symptoms and improvements in overall quality of life. Access to such a critical therapy should not be a privilege but a right for all Canadians affected by Rett syndrome.
We call on Canadian health authorities, provincial and territorial governments, and pharmaceutical stakeholders to collaborate and establish a transparent, equitable framework for the distribution and funding of Daybue across Canada. This should involve developing a managed access program that ensures timely and affordable delivery of the treatment to all eligible patients.
By doing so, we can ensure that no Canadian with Rett syndrome is left behind, allowing them the chance to lead fuller, more engaged lives. Please sign this petition to advocate for prompt and fair access to Daybue for all Canadians in need.
Change begins with you. Thank you for supporting the Ontario Rett Syndrome Association of Canada and the families we serve.
2,135
The Issue
Canadians living with Rett syndrome now have an approved therapy. Daybue (trofinetide) is the first and only Health Canada approved treatment that addresses the core symptoms of this devastating neurodevelopmental condition. Yet, despite federal approval, most Canadians with Rett syndrome cannot access it.
Today, only a small number of families in Canada have been able to obtain Daybue, often through exceptional circumstances, private means, or limited compassionate pathways. This has created a profound disparity in health equity within our country. While some individuals have the chance to improve their quality of life, many others are left to face significant unmet medical needs.
Rett syndrome is a rare and life-altering disorder that severely impacts individuals and their families. The condition is characterized by a relentless progression of physical and mental challenges, including loss of speech, motor skills, and the ability to perform basic functions. It affects almost every aspect of daily life.
Clinical trials and real-world evidence have demonstrated that Daybue can provide significant benefits, including the reduction of the burden of certain symptoms and improvements in overall quality of life. Access to such a critical therapy should not be a privilege but a right for all Canadians affected by Rett syndrome.
We call on Canadian health authorities, provincial and territorial governments, and pharmaceutical stakeholders to collaborate and establish a transparent, equitable framework for the distribution and funding of Daybue across Canada. This should involve developing a managed access program that ensures timely and affordable delivery of the treatment to all eligible patients.
By doing so, we can ensure that no Canadian with Rett syndrome is left behind, allowing them the chance to lead fuller, more engaged lives. Please sign this petition to advocate for prompt and fair access to Daybue for all Canadians in need.
Change begins with you. Thank you for supporting the Ontario Rett Syndrome Association of Canada and the families we serve.
2,135
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Petition created on January 17, 2026