Amplifying the collective voice of New Zealanders with rare disorders

Ruby Culley brings senior clinical, governance, Māori health, primary care, public health, workforce development, and service improvement experience. Ruby recognises the challenges of delayed diagnosis, fragmented services and inequitable access, and the need for culturally safe navigation, whānau-centred care, data sovereignty, Māori clinical and research representation, and Māori leadership in decision-making.

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.