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Introducing the “Global PKU Association”
The Canadian PKU and Allied Disorders Inc. is proud to announce that is part of the foundation of the “Global PKU Association”. You will find additional information regarding this new association: the vision, mission and priorities in the attachment below. As the foundation of this new organization is still in the early phases additional information will be published over time. Please read the official announcement in the link below.

Global PKU Association announcement, August 1st, 2017



Current Status of Newborn Screening Worldwide was updated on August 31, 2016.  




Global Genes has announced the 2016 RARE Champion of Hope Honourees!


The April 2106 edition of Nature Biotechnology had an article by Emil D Kakkis, Sara Kowalcyk & Max G Bronstein titled “Accessing the accelerated approval pathway for rare disease therapeutics“.  It is relevant to the struggles we have seen in Canada with getting treatments for PKU reviewed and covered in a timely fashion.




European Guidelines on treatment of PKU

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