The latest updates from RDNZ and the rare disorder community. 

Jul 8, 2020, 6:12 PM
Caring in lockdown: Forgotten families during Covid-19

When things go really wrong they are the last line of defence for the most vulnerable, but a survey of almost 700 family carers shows how invisible and unsupported these New Zealanders have been during Covid-19.

Jul 7, 2020, 2:51 PM
RDI Statement on COVID-19 response and recovery

What this global pandemic has shown is that “the virus does not discriminate, but its impacts do” Antonio Guterres, United Nations Secretary General

Jun 28, 2020, 4:37 PM
Media release: “It’s time to make the 300,000 families affected by rare disorders a health priority”

Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder.

Jun 16, 2020, 4:51 PM
Media release: Rare Disorders NZ welcomes the Health System Review

Rare Disorders NZ welcomes the recommendations within the New Zealand Health and Disability System Review. This Review seeks to make long term improvements which would benefit all New Zealanders including those with a rare disorder.

Jun 15, 2020, 7:10 PM
Report from ECRD and RDI virtual conferences

RDNZ’s Chief Executive Lisa Foster attended two major European conferences in May.

May 25, 2020, 5:30 PM
Fair for Rare NZ campaign update

Now that New Zealand is opening up after the COVID-19 lockdown, we are ready to re-ignite our collective call for fairness for people with rare disorders.

May 10, 2020, 9:28 PM
Media statement – PHARMAC’s funding increase

Rare Disorders NZ is extremely disappointed with the announcement yesterday of a pre-budget boost to PHARMAC’s funding by $160 million over four years.

Apr 29, 2020, 1:52 PM
MSD makes temporary changes as part of COVID-19 response

The Ministry of Social Development (MSD) has made some temporary changes to document requirements as part of the COVID-19 response.

Apr 22, 2020, 7:18 PM
Media statement: Recent PHARMAC funding decisions

You may have read about PHARMAC’S decision this week to scrap a lung cancer drug funding plan.

Apr 16, 2020, 3:53 PM
CE update - together we are strong

Here at Rare Disorders NZ we have been busy asking, listening and providing a voice to the Government to ensure the needs of people with rare disorders are included in their planning.