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Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Latest news
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.
Media release: Who will win the coveted Rare Beer Crown?
Unusual brews made with seafood, foraged botanicals and barrel-aged ales are just some of the entries vying to win a new city-wide beer competition.
The Listener article: Seeking action
An article in this week's The Listener magazine highlights the challenges faced by those living with a rare disorder and the need for a National Rare Disorder Framework to address those challenges.