Scoop has an Ethical Paywall
Scoop InfoPages
This InfoPage in unregistered, if this is your news page register Rare Disorders NZ for InfoPages here.
Rare Disorders NZ - Latest News [Page 1]
New Changes To Support Funding Further Deprive Disabled Kiwis Of Choices And Opportunities, Says Rare Disorders NZ
Thursday, 21 March 2024, 10:19 am | Rare Disorders NZ
Rare Disorders NZ is alarmed that the Minister for Disability Issues is blaming carers for misusing support funding intended for their children as a reason for Whaikaha suddenly tightening how disability support funding can be used, without any consultation ... More >>
Pharmac-initiated Lengthy Review A Waste Of Valuable Time And Resources, Says Rare Disorders NZ
Tuesday, 19 March 2024, 7:10 am | Rare Disorders NZ
Rare Disorders NZ is very concerned that Pharmac will not extend access to life-saving medicines for children with rare disorders in line with child cancer patients under Rule 8.1b More >>
Rare Disorders NZ Wants New Minister For Pharmac To Act Swiftly To Remove Pharmac Chair
Tuesday, 28 November 2023, 2:14 pm | Rare Disorders NZ
Rare Disorders NZ has today written to the new Minister for Pharmac, David Seymour, reiterating their call for the removal of Pharmac’s Chair, Steve Maharey. Rare Disorders NZ is appalled no action has been taken against the CEO of Pharmac, Sarah ... More >>
Rare Disorders NZ Appalled By Attitude Within Pharmac; Calls For Chair’s Removal
Wednesday, 11 October 2023, 2:59 pm | Rare Disorders NZ
Rare Disorders New Zealand is calling on the Minister of Health to remove Steve Maharey as Pharmac’s Chair after he has failed to take strong action against the CEO of Pharmac, Sarah Fitt, for the unacceptable language revealed in internal correspondence ... More >>
Making The Invisible 300,000 Kiwis Count
Sunday, 24 September 2023, 8:45 am | Rare Disorders NZ
All New Zealanders living with a rare disorder and their carers are being called on to participate in the country’s largest survey on living with a rare disorder in New Zealand. The Voice of Rare Disorders Survey is a biannual survey initiated ... More >>
Our Voice Of Rare Disorders Survey 2023 Is Now Open – Please Share!
Monday, 18 September 2023, 2:56 pm | Rare Disorders NZ
It’s time for Rare Disorders NZ’s biannual survey on living with a rare disorder in Aotearoa New Zealand! Currently, no comprehensive data is collected on rare disorders in New Zealand, which is why our biannual surveys are so vital to fill the current ... More >>
Rare Disorders Omission From Cabinet Paper Concerning, Says Rare Disorders NZ
Friday, 1 September 2023, 9:00 am | Rare Disorders NZ
Rare Disorders NZ is alarmed that despite Manatū Hauora working for the past year on New Zealand’s first Rare Disorders Strategy to address the inequitable health outcomes for those affected by rare disorders, the rare disorder community has not ... More >>
COVID-19 Restrictions Lifted Too Soon, Says Rare Disorders NZ
Tuesday, 15 August 2023, 3:25 pm | Rare Disorders NZ
Rare Disorders NZ is extremely frustrated that the Government is scrapping all remaining COVID-19 restrictions while Pharmac is still in the process of deciding whether to widen the access criteria for COVID-19 antivirals. Currently the access criteria ... More >>
Treatment For Severe Rare Disorder Finally Available, But Screening Is Not
Friday, 2 June 2023, 9:53 am | Rare Disorders NZ
Rare Disorders NZ has written to the Minister of Health asking her to urgently look into why no progress has been made to include spinal muscular atrophy (SMA) in the newborn screening programme, despite Pharmac approving two life-saving therapies ... More >>
‘Blind Spot’ In Health System Due To Lack Of Data On Rare Disorders
Wednesday, 10 May 2023, 6:21 pm | Rare Disorders NZ
A new report being launched today by Rare Disorders NZ exposes the shockingly low quantity of data available on rare disorders in New Zealand, indicating that government heath entities have no sense of the prevalence of rare disorders or the scale of ... More >>
Aotearoa Called To #GlowUpShowUp For Rare Disorders Month
Tuesday, 28 February 2023, 7:07 am | Rare Disorders NZ
Today is International Rare Disease Day and marks the start of the first Aotearoa Rare Disorders Month. Rare Disorders New Zealand (RDNZ) is calling on Aotearoa to Glow Up and Show Up for the rare disorder community throughout March in recognition ... More >>
New Zealanders Affected By Rare Disorders Share Their Struggles With Education System At International UN-agency Meeting
Tuesday, 29 November 2022, 12:15 pm | Rare Disorders NZ
Two representatives from the rare disorder community in New Zealand today participated in a UNESCO-led international meeting to discuss better inclusion in the education system for children living with a rare disorder. UNESCO is an agency of the United ... More >>
Reducing Access To Cancer Medicine For Children To Improve Equity Unacceptable, Says Rare Disorders NZ
Thursday, 10 November 2022, 9:00 am | Rare Disorders NZ
Rare Disorders NZ is deeply concerned that Pharmac’s announced review of rule 8.1b of the Pharmaceutical Schedule may lead to reduced access to medicines for children with cancer. Currently rule 8.1b ensures all medicines to treat children with cancer ... More >>
Experts Convene To Discuss NZ’s Poor Track Record On Rare Disorders
Wednesday, 26 October 2022, 10:34 am | Rare Disorders NZ
Rare disorder experts from around the world, including New Zealand, are convening for a virtual roundtable today to discuss the dire situation for people living with a rare disorder in New Zealand. New Zealand lags behind most other comparable OECD ... More >>
Pharmac’s Spinraza Announcement Welcome But Long Overdue
Wednesday, 28 September 2022, 11:39 am | Rare Disorders NZ
Rare Disorders NZ is thrilled for those affected by spinal muscular atrophy (SMA) to finally receive news today that Pharmac has reached a provisional agreement with medicine supplier Biogen to fund nusinersen (brand name Spinraza) for people with ... More >>
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 >>
