Rare Disorders NZ has made a submission to Pharmac’s review of rule 8.1b of the Pharmaceutical Schedule

Rare Disorders NZ supports the expansion of rule 8.1b to include all children with serious illnesses, including those with rare disorders and other life-threatening illnesses where there is a medicine available – currently funded or not. Not only life-threatening illnesses but also conditions where early treatment would prevent decline and ill health later in life. Early treatment is essential for long term health and development of children and their future well-being.

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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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