The latest updates from RDNZ and the rare disorder community. 

Mar 1, 2021, 1:00 PM
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.

Feb 28, 2021, 9:00 AM
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.

Feb 23, 2021, 12:58 PM
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.

Feb 17, 2021, 2:10 PM
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.

Feb 16, 2021, 12:17 PM
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.

Feb 15, 2021, 1:36 PM
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.

Feb 1, 2021, 1:45 PM
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.

Jan 11, 2021, 3:38 PM
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.

Jan 11, 2021, 1:25 PM
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.

Dec 20, 2020, 12:20 PM
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.