Amplifying the collective voice of New Zealanders with rare disorders

Kylie Hough-Kennedy is a Registered Nurse with a background in intensive care, acute hospital services and kaupapa Māori primary healthcare. She began her nursing career as a new graduate in ICU in 2019 and transitioned into primary health nursing in 2026, working with Arowhenua Whānau Services. Kylie affiliates to Ngāti Mutunga o Wharekauri, Ngāti Mutunga, Ngāti Tama, Ngāti Toa and Te Āti Awa. Growing up on the Chatham Islands has shaped her understanding of the challenges that isolation and inequity can create in accessing healthcare.

Alongside her professional experience, Kylie brings lived experience as a mother navigating the health system with her daughter, who has 18q deletion syndrome. This has given her insight into both the clinical and personal realities of complex care, including the advocacy required to navigate multiple specialties and long-term health needs. Kylie is passionate about equitable, culturally safe and whānau-centred care, and ensuring the voices and experiences of Māori and whānau living with rare disorders meaningfully inform research, policy and 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.