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. MISSION STATEMENTCanadian 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. 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. LA MISSION DE CANPCU+La PCU et maladies apparentées Canada est une association à but non lucratif de bénévoles créée au printemps 2008 à Toronto, en Ontario. Nous nous engageons à fournir des nouvelles, des informations et un soutien précis aux familles et aux professionnels travaillant avec la phénylcétonurie et des troubles métaboliques héréditaires rares similaires. Notre mission est d’améliorer la vie des personnes atteintes de PCU et de troubles apparentés ainsi que la vie de leurs familles. Par troubles apparentés, nous entendons d’autres troubles métaboliques héréditaires rares, également détectés par le miracle moderne du dépistage néonatal. Nous sommes à jamais reconnaissants à John Adams, Cristian Baigorria et Tatiana Dociu, qui ont compris la nécessité d’avoir une voix unifiée pour les patients atteints de PCU et ont fondé cette organisation. PCU QUÉBECPhénylcétonurie Québec is a blog owned by Tristan Audet, a Quebecer living with phenylketonuria. Working in communication and social media expert, he is using is skills to share ideas, tips and his positive experience with phenylketonuria to the PKU community. CANADIAN PKU AND ALLIED DISORDERS INC. WEBSITE INFORMATIONWebsite Mission: Website Information Disclaimer: Website editor and editing process: Source of funding: |
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