The latest updates from RDNZ and the rare disorder community. 

Dec 8, 2021, 10:13 PM
RDNZ Submission on Pae Ora (Healthy Futures) Bill

Rare Disorders NZ has made a submission to the Pae Ora Legislative Committee on the Pae Ora (Healthy Futures) Bill.

Nov 23, 2021, 8:36 AM
Open letter to the Government to establish an innovative acceleration fund for PHARMAC

ASK: Establish an innovative acceleration fund for PHARMAC to reduce pressure on the NZ health system.

Nov 18, 2021, 4:07 PM
Children with rare disorders share messages with the Prime Minister

To mark International Children’s Day, messages from children from the rare disorder community throughout New Zealand will be handed to the Prime Minister to tell her what it means to live with a rare disorder.

Nov 10, 2021, 1:12 PM
Call for people living with rare disorders to take part in major survey

A survey to collect much-needed data on what it means to live with a rare disorder in New Zealand is now live, and aiming to reach as many respondents as possible.

Oct 30, 2021, 10:00 AM
United Nations Event for SMA

Leading advocates urge Government to act for those living with the condition in New Zealand

Oct 28, 2021, 11:44 AM
Rare Disorders NZ invited to present at an International United Nations event.

Rare Disorders NZ and Patient Voice Aotearoa will be presenting at an international virtual event with high level stakeholders to bring attention to spinal muscular atrophy (SMA) – a rare, inherited neuromuscular disease.

Oct 18, 2021, 12:58 PM
Children’s Day 2021 colouring competition

The Kōtare (sacred kingfisher) is a taonga of Aotearoa New Zealand. It is common, but is not often seen. That’s why they’re a perfect symbol for rare disorders. As part of our ongoing ‘Fair For Rare’ campaign, we’re running a colouring competition for Children’s Day 2021 (November 20)

Oct 13, 2021, 10:43 AM
Rare Disorders NZ: October Update

In this issue.  International Children's Day Colouring Competition, Health Select Committee Hearing, Wellington Rare Disorder Catchup, The Medicine Gap, COVID Vaccine Update

Oct 12, 2021, 5:39 PM
Submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey”

Rare Disorders NZ has made a submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey” on behalf of the rare disorder community as we do not feel those with a rare disorder have been included in the survey questions

Aug 16, 2021, 2:38 PM
Ministry of Health recommendation not to proceed with a rare disorder national framework

The Ministry of Health does not recommend the development of a national framework for rare disorders at this stage.