News
The latest updates from RDNZ and the rare disorder community.
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.
Submissions on the Holidays (Increasing Sick Leave) Amendment Bill
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.
New strategy to accelerate diagnosis and improve treatment of rare diseases in the UK
The new framework will raise awareness of rare diseases, speed up diagnosis and improve care and treatment.
Rare disorders: Charity aiding thousands of Kiwi families fears closure (NZ Herald)
A lifeline for thousands of Kiwi families fighting crippling rare disorders fears closure due to financial woes.
Make a submission on the Sick Leave bill
There is an opportunity to make submissions on the extension of the sick leave bill, a positive initiative for people living with a rare disorder and their carers.
Briefing to Incoming Minister
Rare Disorders NZ has sent a Briefing to new Minister of Health Andrew Little on behalf of the rare disorder community.