Submission to Pharmac on Proposal to fund supplements for phenylketonuria

Rare Disorders NZ made a submission in response to Pharmac's proposal to fund supplements for phenylketonuria and other inborn errors of metabolism.

We are pleased to see that people with phenylketonuria (PKU) are now having their unmet needs recognised, and New Zealand is making steps towards meeting internationally recognised standards of care.

Rare Disorders NZ support the changes proposed to the eligibility criteria for currently funded foods and supplements for inborn errors of metabolism in Section D and Part II Section H of the Pharmaceutical Schedule to simplify access for people with inborn errors of metabolism.

Rare Disorders NZ have been long-time advocates for access to medicines for Rare Disorders including phenylketonuria (PKU). It is important to reference the advocacy as it has taken a significant toll on patients, their loved ones, and the rare disorder community in the time that it has taken to get to this point.

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