The Canadian MPS Society has been strongly advocating to add MPS I-H (Hurler Syndrome) to all newborn screening panels throughout Canada. To date, MPS I-H has been added to the Ontario Newborn Screening Panel, with the strong advocacy efforts of Newborn Screening Ontario and in 2021, a recommendation was submitted to the BC Ministry of Heath.
In Canada, each Province requires a unique strategy to put a disease recommendation forward to Health Ministries. “The current Province by Province system is fractured and is causing unacceptable delays in diagnosis and access to treatment for these children.” says Kim Angel, Executive Director of the Canadian MPS Society. “A federal strategy is imperative to drastically change the outcomes for these children, where there are treatments available.”
Readers might recall meeting Cristina Chiapetta at our 2021 National Family Conference. Christina’s daughter Gianna was the first baby in Canada to be positively screened for MPS IH in Canada.
To learn more about #NBS4MPS, please visit this website developed by the Isaac Foundation in partnership with the Canadian MPS Society. #NBS4MPS | Newborn Screening for MPS 1-H (mpsnewbornscreening.ca)