The latest updates from RDNZ and the rare disorder community. 

May 17, 2022, 11:18 PM
Governor-General becomes patron of Rare Disorders NZ

We are honoured to have received confirmation that Her Excellency, The Right Honourable Dame Cindy Kiro, GNZM, QSO, Governor-General of New Zealand, has accepted our invitation to become patron of Rare Disorders NZ.

Mar 31, 2022, 2:35 PM
RDNZ's statement on Minister Little's comments about Pharmac funding

Rare Disorders NZ is extremely frustrated to hear the Minister of Health this week dismiss the call to increase funding for Pharmac to fund the medicines on its Options for Investment list due to budget constraints.

Mar 31, 2022, 2:16 PM
RDNZ makes submission to Mental Health and Wellbeing Commission

Rare Disorders NZ has made a submission to the Mental Health and Wellbeing Commission on the He Ara Āwhina (Pathways to Support) framework, which describes what an ideal mental health and addiction system looks like.

Mar 2, 2022, 10:42 PM
RDNZ makes submission to Highest Needs Review

Rare Disorders NZ has made a submission to the Ministry of Education’s Highest Needs Review and is encouraging anyone with an interest in this area to also make a submission by 31st March 2022.

Feb 28, 2022, 12:30 AM
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.

Dec 8, 2021, 2:33 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, 2:27 PM
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, 2:19 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, 2:18 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, 2:17 PM
United Nations Event for SMA

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