News
The latest updates from RDNZ and the rare disorder community.
Largest-ever survey on New Zealanders living with rare disorders confirms huge health inequities for this population group
A new survey on the impact of living with, or caring for, people with a rare disorder in New Zealand finds alarming failings in the health system, particularly when it comes to timely diagnosis, treatment access and coordinated care for people living with a rare disorder.
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.
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.
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.
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.
United Nations Event for SMA
Leading advocates urge Government to act for those living with the condition in New Zealand
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.
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)
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
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.