The latest updates from RDNZ and the rare disorder community. 

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.

Nov 25, 2020, 12:41 PM
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.

Nov 24, 2020, 1:29 PM
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.

Nov 11, 2020, 1:42 PM
Webinar: rare disorder support group advocacy

This week advocacy expert Penny Tucker hosted a webinar to give our support groups advocacy tools.

Nov 8, 2020, 2:28 PM
Promoting awareness of rare disorders

Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last week.

Oct 18, 2020, 4:09 PM
Webinar: pain management for rare disorders

Last week Dr Buzz Burrell hosted a webinar focusing on managing pain for a person's own chronic health condition or on behalf of someone they support.

Sep 16, 2020, 6:56 PM
Media release: Rare Disorders NZ supports Human Rights Commission case against PHARMAC

Rare Disorders NZ (RDNZ) supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug.

Aug 25, 2020, 4:25 PM
Auckland 44yo fitted with pacemaker due to rare disease now fighting for others

A 44-year-old man had to be fitted with a pacemaker after he collapsed while making coffee for his wife.