News
The latest updates from RDNZ and the rare disorder community.
Fair for Rare NZ campaign milestone
Last Wednesday RDNZ’s collective petition calling for urgent reform of the health system to include all people living with a rare disorder was handed over at Parliament.
Media release: Are the odds fair on Rare Roulette?
Living with a rare health condition can be a genetic lottery as well as a complete game of chance in terms of the support and healthcare available in New Zealand.
New Zealand's lack of rare disorder policy highlighted at UN meeting
RDNZ's CE Lisa Foster and Chair James McGoram had a fantastic opportunity to contribute to a Rare Disease International Policy Event on a UN Resolution for Rare Diseases last week.
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.
Meeting with the Minister of Health
RDNZ CE Lisa Foster, Chair James McGoram and mum Sue Haldane met with the Health Minister Andrew Little today on behalf of the 300,000 New Zealanders living with a rare disorder.
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.
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.