Our mission
Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Latest news
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.
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.
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.
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.