News
The latest updates from RDNZ and the rare disorder community.
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.
Webinar: Finding a needle in the haystack: a genetic diagnosis for a one-in-a-million condition
On Monday Dr Louise Bicknell of Otago University hosted a webinar focusing on genetics and rare disorder research.
Webinar: rare disorder support group advocacy
This week advocacy expert Penny Tucker hosted a webinar to give our support groups advocacy tools.
Promoting awareness of rare disorders
Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last week.