Our mission

Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder


Latest news

Mar 1, 2021, 5:13 PM
Media release: Briny brew wins the inaugural Rare Beer Challenge award

The Pāua Man Porter, a robust 8.4% Baltic Porter brewed with the addition of fresh pāua, has won the first ever Rare Beer Challenge.

Feb 28, 2021, 9:00 AM
NZ Herald - 'Sliding around in the dark': What it's like to have a rare disorder in New Zealand

Medical advice from Facebook, waiting years for a diagnosis, juggling dozens of specialists and even wishing it was cancer instead: these are the realities faced by the thousands of New Zealanders living with a rare disorder.

Feb 23, 2021, 12:58 PM
The Detail: Urgent call for framework to treat Kiwis with rare disorders

Hundreds of thousands of Kiwis have rare disorders but there is no official definition of what is rare, no register, no dedicated health policy and no co-ordinated support.

Feb 17, 2021, 2:10 PM
Media release: Be Rare Aware and support an inclusive health system for all New Zealanders

The New Zealand Government’s support of vulnerable people throughout the COVID-19 pandemic should be applauded - but more should be done to help the 6% of the population living with a rare disorder.

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