The Manitoba Rett Syndrome Association (MRSA), as part of the Canadian Rett Syndrome Coalition, stands with families across the country in response to the recent decision by Canada’s Drug Agency (CDA) not to recommend coverage of DAYBUE® (trofinetide) — the first and only Health Canada–approved treatment for Rett syndrome.
This decision leaves hundreds of Canadian children and adults without access to the only therapy proven to improve communication, mobility, and overall quality of life for those living with Rett syndrome.
The Canadian Rett Syndrome Coalition, with support from the Canadian Organization for Rare Disorders (CORD), has formally requested that the CDA reconsider this decision through a Time-Limited Managed Access (TLMA) program — a pathway already used successfully for other rare diseases.
This is not an unreasonable ask. This is equity. This is compassion. This is what our loved ones deserve.
Families affected by Rett syndrome are calling on the CDA and all provincial and territorial governments to reconsider and provide access to treatment. Every person living with Rett syndrome deserves the chance at improved health outcomes and quality of life.
Read the full press release issued jointly by the Canadian Rett Syndrome Coalition and the Canadian Organization for Rare Disorders (CORD) .
📄 Download the Full Press Release (PDF)
About the Manitoba Rett Syndrome Association (MRSA):
The Manitoba Rett Syndrome Association is a volunteer-driven, non-profit organization dedicated to supporting families, promoting awareness, and advocating for improved access to care and treatment for those living with Rett syndrome across Manitoba.
💜 Website: www.rettsyndrome.mb.ca
📧 Email: info@rettsyndrome.mb.ca
#RettSyndrome #RareDiseaseEquity #CanadianRettCoalition #AccessMatters #ManitobaRett
