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Rare Disorders NZ - Latest News [Page 2]
Statement From Rare Disorders NZ On Pharmac Review
Thursday, 2 June 2022, 11:09 am | Rare Disorders NZ
After years of tireless advocacy, Rare Disorders NZ overjoyed Minister instructs development of Rare Disorder Strategy Rare Disorders NZ applauds the Government for accepting the Pharmac Review Panel’s recommendation to ‘develop a strategy that ... More >>
Statement From Rare Disorders NZ RE Minister Little's Comments On Pharmac Funding
Thursday, 31 March 2022, 1:30 pm | Rare Disorders NZ
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. His comments were in response to a ... More >>
Largest-ever Survey On New Zealanders Living With Rare Disorders Confirms Huge Health Inequities
Sunday, 27 February 2022, 6:47 pm | Rare Disorders NZ
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 ... More >>
Children With Rare Disorders Share Messages With The Prime Minister
Friday, 19 November 2021, 2:10 pm | Rare Disorders NZ
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. Through a colouring competition organised ... More >>
UN Event For Rare Disorder SMA: Leading Advocates Urge Government To Act For Those Living With The Condition In NZ
Monday, 1 November 2021, 6:42 am | Rare Disorders NZ
October 29, 2021 All change starts with awareness and today we had the privilege to be part of a powerful United Nations event to raise awareness of a rare disorder called Spinal Muscular Atrophy (SMA). The opening address was provided by H.E. Mr. ... More >>
Rare Disorders NZ Invited To Present At An International United Nations Event
Thursday, 28 October 2021, 1:04 pm | Rare Disorders NZ
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. The event has been initiated ... More >>
Rare Disorders NZ Invited To Present At An International United Nations Event
Thursday, 28 October 2021, 9:01 am | Rare Disorders NZ
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. The event has been initiated ... More >>
Health Access Must Be Based On Need Not Diagnosis As Disease Does Not Discriminate
Thursday, 6 May 2021, 1:25 pm | Rare Disorders NZ
Rare Disorders NZ (RDNZ) supports Patient Voice Aotearoa’s nationwide ‘Lie Down for Life’ to call for better access to modern medicines for genetic, undiagnosed and rare disorders. “Anyone, anytime, could find themselves or a loved one having ... More >>
Are The Odds Fair On Rare Roulette?
Thursday, 18 March 2021, 1:26 pm | Rare Disorders NZ
Living with a rare health condition can be a genetic lottery as well as a complete game of chance in terms of the support and healthcare available in New Zealand. “Anyone, anytime, could find themselves or a loved one having to cope with the symptoms of ... More >>
Be Rare Aware And Support An Inclusive Health System For All New Zealanders
Thursday, 18 February 2021, 11:23 am | Rare Disorders NZ
The New Zealand Government’s support of vulnerable people throughout the COVID-19 pandemic should be applauded - but more should be done to help the 6% of the population living with a rare disorder. “To better support people with a rare health condition, ... More >>
Who Will Win The Coveted Rare Beer Crown?
Wednesday, 17 February 2021, 11:15 am | Rare Disorders NZ
Unusual brews made with seafood, foraged botanicals and barrel-aged ales are just some of the entries vying to win a new city-wide beer competition. Eleven Wellington-based brewers will take part in the inaugural Rare Beer Challenge next month to raise awareness ... More >>
Rare Disorders NZ Supports Human Rights Commission Case Against PHARMAC
Thursday, 17 September 2020, 2:50 pm | Rare Disorders NZ
Rare Disorders NZ (RDNZ) supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug. “Our organisation whole-heartedly supports Fiona’s case for effective treatment,” ... More >>
Parliamentary Petition: Time To Make The 300K Families Affected By Rare Disorders A Health Priority
Monday, 29 June 2020, 4:00 pm | Rare Disorders NZ
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 ... More >>
PHARMAC Funding Increase "Extremely Disappointing"
Monday, 11 May 2020, 6:15 pm | Rare Disorders NZ
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. In real terms this amount is a drop in the ocean of unmet need for adequate medicine funding ... More >>
Recent PHARMAC Funding Decisions
Thursday, 23 April 2020, 4:08 pm | Rare Disorders NZ
You may have read about PHARMAC’S decision this week to scrap a lung cancer drug funding plan . Rare disorders are often more complex and less understood than common conditions, which leads to marginalisation and even dismissal. This is evident in ... More >>
Rare Disorders NZ Provides Vital Voice For Vulnerable Group
Thursday, 16 April 2020, 3:46 pm | Rare Disorders NZ
People living with rare disorders are vulnerable in the current pandemic and need extra support to ensure their voices are heard. Rare Disorders NZ (RDNZ) commends the Government for ensuring there is a way for this group’s concerns to be heard ... More >>
Call For Immediate Government Action To Remedy “Unfair Barriers” For 6% Of New Zealanders
Friday, 28 February 2020, 11:46 am | Rare Disorders NZ
A major campaign’s being launched at Parliament this afternoon to call for the rights of 300,000 New Zealanders struggling to navigate daily life with a rare disorder. Front and centre of the Fair for Rare NZ campaign is an immediate call for the government ... More >>
Join Us This Rare Disease Day To Help Those With A Rare Disorder
Thursday, 13 February 2020, 3:19 pm | Rare Disorders NZ
A nationwide campaign to raise awareness and money for the 300,000 New Zealanders living with a rare disorder was launched last month by Rare Disorders NZ. Nicola's youngest son James was taken from his family at just five years old by a condition ... More >>
A Unique Beer For A Sobering Problem
Thursday, 13 February 2020, 6:51 am | Rare Disorders NZ
Craft beer fans in Wellington and Auckland will have the chance to experience a very special brew for Rare Disease Day at the end of the month. Rare Disorders NZ and award-winning brewers Fortune Favours have teamed up to create a unique beer ... More >>
Rare Disorders NZ congratulates Kalydeco campaigners
Monday, 27 January 2020, 3:39 pm | Rare Disorders NZ
Rare Disorders NZ (RDNZ) congratulates campaigners after PHARMAC announced their decision to fund a medicine for people living with cystic fibrosis in New Zealand. More >>
