About CanPKU+
Canadian PKU and Allied Disorders Inc. (CanPKU+) is a national nonprofit dedicated to supporting individuals and families affected by phenylketonuria (PKU), maple syrup urine disease (MSUD), homocystinuria (HCU), and urea cycle disorders (UCDs). Established in 2008, our organization began with a handful of parents whose children were diagnosed with PKU — a rare, inherited metabolic disease that, if untreated within the first two weeks of life, can lead to developmental disabilities and neurological complications.
From the start, our goal was to create an umbrella group for families affected by metabolic disorders sharing common traits with PKU: conditions diagnosed through newborn screening and managed by strict medical treatments involving specialized medical foods, formulas, and protein restrictions.
Over time, CanPKU+ has grown to include support for those living with HCU, MSUD, and UCDs — including ornithine transcarbamylase deficiency (OTC). We are proud to serve a connected, informed, and empowered community across Canada.
Our organization collaborates closely with patients, families, clinicians, researchers, and industry partners to address the unique challenges of managing these rare disorders. We provide comprehensive educational resources, host annual national conferences, advocate for improved healthcare access, and distribute essential tools that promote dietary adherence and improve patient outcomes.
Committed to inclusion and bilingual support, our programs foster community-building and practical assistance, empowering families to confidently navigate the complexities of lifelong treatment.
As we continue to grow, CanPKU+ remains dedicated to bridging gaps between science, healthcare, and lived experience—ensuring that no family faces these rare conditions alone.
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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 Homocystinuria (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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