The latest updates from RDNZ and the rare disorder community.
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.
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.
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.
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.
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.
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.
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.
On Friday 29 January RDNZ’s CE Lisa Foster, alongside three support group leads, gave an oral submission to the Education and Workforce Committee on the impact of increasing sick leave for families living with a rare disorder.