Log in


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. 


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.

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 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.


Phénylcétonurie 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.
You can reach the blog or the Facebook page here :


Website Mission:
Provide accurate news, information and support to families and professionals dealing with phenylketonuria and similar, rare, inherited metabolic disorders.

Website Information Disclaimer:
Any information on the Canadian PKU and Allied Disorders Inc. website is intended for informational and educational purposes only and in no way should be taken to be the provision or practice of medical, nursing or professional health-care advice or services. This information should not be considered complete or exhaustive and should not be used in place of the visit, call, consultation or advice of your physician or other health-care provider. You should not use the information on this website or any Canadian PKU and Allied Disorders Inc. communication to diagnose or treat PKU or any other disorder without first consulting with your physician or healthcare provider. Any referral to physicians is provided as a courtesy only. No information is collected from visitors to our website

Website editor and editing process: 
Information to be posted in CanPKU+ website is submitted by our members, members of board, professionals or companies related to PKU and other metabolic disorders, the information is reviewed by the website team (CEO, VP, and Chair) and/or our medical advisor and if approved is published.

Source of funding:
This website is managed by volunteers and no funding from any source supports the content.
Our website does not host any form of advertisement.

2021 © Copyright CanPKU.ORG


260 Adelaide Street East, #180
Toronto, ON, M5A 1N1, Canada
Toll Free: 1-877-226-7581 (1-877-CANPKU1)

Powered by Wild Apricot Membership Software