About CanPKU+
It started with a handful of parents who had children of various ages diagnosed with PKU is short for phenylketonuria (pronounced fen’-il-kee’-to-nu’-ria). PKU is a rare, inherited metabolic disease that results in developmental disability and other neurological problems when treatment is not started within the first two weeks of life.
We always wanted to provide an umbrella group for those who did not have their own association, but shared things in common with PKU such as diagnosed by newborn screening, treated by following a medical treatment that included medical foods and medical formulas along with a restriction of protein.
Overtime, we have grown to include Homocystinuria (HCU), Maple Syrup Urine Disease (MSUD), Urea Cycle Disorders (UCDs) including OTC.
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Mission Statement
Canadian PKU and Allied Disorders Inc. is a non-profit association of volunteers, first organized in the Spring of 2008 based in Toronto, Ontario. We are dedicated to providing accurate news, information and support to families and professionals dealing with phenylketonuria and similar, rare, inherited metabolic disorders.
Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families. By allied disorders, we mean other rare, inherited metabolic disorders also detected by the modern miracle of newborn screening, including but not limited to omocystinuria (HCU), Maple Syrup Urine Disease (MSUD), Urea Cycle Disorders (UCDs) including OTC.
We are forever thankful to John Adams, Cristian Baigorria and Tatiana Dociu, who saw the need for a unified voice for PKU patients and founded this organization.
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