Rare Disorders NZ welcomes Pharmac expanding the range of supplements available to provide greater choice and improve the lives of people with Phenylketonuria (PKU) and other inherited metabolic disease. However, we also note that while New Zealand is making steps towards meeting internationally recognised standards of care, there is still a way to go in terms of both medication and food/supplement access for those with inherited metabolic disease.

Read the full submission here.

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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