The latest updates from RDNZ and the rare disorder community. 

Dec 10, 2019, 10:47 AM
Rare Beer brewers needed

As part of Rare Disease Day 2020, RDNZ has teamed up with Fortune Favours craft beer brewers to create a Rare Beer.

Nov 18, 2019, 1:02 PM
Let your voice count to make a difference: NZ Voice of Rare Disorders survey

This survey is open to anyone who is living with a rare disorder in NZ, as well as their family members and carers.

Nov 13, 2019, 10:07 AM
Folic acid fortification of flour

Rare Disorders NZ supports mandatory fortification of bread with folic acid to reduce neural tube defects.

Nov 5, 2019, 11:06 AM
APARDO Regional Collaboration for Global Change Summit

Lisa Foster was an invited speaker at the Asia Pacific Alliance of Rare Disease Organisations (APARDO) summit in Taiwan last month.

Oct 21, 2019, 1:35 PM
Rare Voices Australia: report launched

On 17 October 2019, Rare Voices Australia launched the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, at Parliament House.

Sep 24, 2019, 2:08 PM
Media release: UN recognition for all people living with a rare disease

Rare Disorders NZ congratulates Rare Diseases International for ensuring that the UN Member States adopted a political declaration on universal health coverage that includes mention of rare diseases.

Sep 2, 2019, 1:24 PM
Media release: People with rare health conditions need equitable treatment

Rare Disorders NZ welcomes the Government’s recent announcement on cancer care and is urging consideration for a wider, inclusive plan to support all New Zealanders with chronic health conditions.

Aug 28, 2019, 11:08 AM
Rare Disorders NZ AGM

The Annual General Meeting of Rare Disorders NZ will take place on Thursday 26 September from 10-10.30am at our offices in Newtown.

Aug 28, 2019, 11:01 AM
Rare Disease Researchers’ Special Interest Group

The second Rare Disease Researchers’ Special Interest Group meeting with 14 key researchers in the fields of rare diseases took place on 2 August 2019 in Wellington at Victoria University’s Rutherford House.

Aug 21, 2019, 1:54 PM
Media release: Rare Disorders NZ supports patient advocates

Rare Disorders NZ supports all people living with a chronic health condition who are brave enough to share their experiences with the media to advocate for changes in the health system.