Amplifying the collective voice of New Zealanders with rare disorders

E kore au e ngaro, he kākano i ruia mai i Rangiātea

Kaa-rin Kaumavae has strong lived whānau experience, with her son diagnosed with Tetrasomy 18p shortly after birth. Kaa-rin has deep connection to Ngātiwai, Ngāpuhi, Ngāti Hine and Patuharakeke. Her background includes kōhanga reo, bicultural social services, mental health, community support, family harm work, and te ao Māori approaches to supporting tāngata whaiora and whānau.

Kaa-rin emphasises Te Tiriti, tino rangatiratanga, Māori voice in decision-making, equitable access to treatment, and rebuilding connection between rare disorder whānau and their hapū/iwi and marae.

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.