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Join our Advocacy Efforts


 This page is still under construction. We anticipate it being updated before Feb 24th, 2025. If it is not, please contact us.


CanPKU+ acknowledges there is much to do when it comes to advocacy for our rare disorders provincially and federally. It is important to us that everyone have fair access to the medical formula, medical foods, and medical supplements. It is critical that diagnosis is timely and correct.


The following areas of our advocacy will have links to independant pages highlighting our advocacy efforts and advising  where YOU can get involved once construction is complete.

International:

  • Working with NPKUA on their Externally Led Patient Focused Drug Development Meeting on a campaigned named TruePKU with the FDA. Outcomes of this meeting will have a ripple effect globally. A strong global presence has been requested. (Press Release) For more information: Link to TruePKU 

Federal:

  • Access to Palynziq through government funded programs
  • Ensuring that Rare Diseases gets access to a portion of the 1.5 million allocated by Minister of Health Jean-Yves  Duclos in 2023 for drugs for rare diseases.
  • Access to enhanced HCU screening to reduce the number of missed diagnosis from 50%
  • Working with Health Canada on regulations around Modernizing Regulations regarding Foods for Special Dietary Purposes (Ex Medical Foods, Medical Formulas and Medical Supplements.
  • Collaborating with iRare Centers to broaden their reach and exposure in Canada
  • Continue to work with Revenue Canada and Canadian  Tax Court on ensuring that those who qualify for the Disability Tax Credit (based on hours dedicated to therapy of various arms) have access to the credit.
  • Roundtable member at Ministerial Roundtable on tariffs impact on the healthcare sector.

Provincial

  • British Columbia - Access to Medication
  • Alberta - Access to basic Newborn Screening for HCU to reduce the number of missed diagnosis from 100%
  • New Brunswick - Access to basic Newborn Screening for HCU to reduce the number of missed diagnosis from 100%
  • Nova Scotia - Access to basic Newborn Screening for HCU to reduce the number of missed diagnosis from 100%
  • Prince Edward Island - Access to basic Newborn Screening for HCU to reduce the number of missed diagnosis from 100%
  • Quebec - Access to basic Newborn Screening for HCU to reduce the number of missed diagnosis from 100%
  • Northwest Territories and areas of Nunavut served by Alberta - Access to basic Newborn Screening for HCU to reduce the number of missed diagnosis from 100%
  • Ontario -  Ensuring that regardless of where you live in the province, you have access to the same diagnostic procedures (In Northern Ontario those living with HCU need to pay for a routine exam, where it is covered in a majority of the province.)