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