The latest updates from RDNZ and the rare disorder community. 

Jun 27, 2023, 9:59 PM
RDNZ frustrated no significant changes made to Accessibility for New Zealanders Bill

Rare Disorders NZ is deeply frustrated that only minor amendments have been put forward by the Social Services and Community Committee to the Accessibility for New Zealanders Bill, ignoring the many concerns raised about the bill by the disabled community, including Rare Disorders NZ, during the select committee process.

Jun 13, 2023, 11:08 PM
Protest hikoi against Therapeutic Products Bill

Rare Disorders NZ joined a protest hikoi organised by Patient Voice Aotearoa on 7th June in Wellington to deliver a petition and open letter to the Government against the Therapeutic Products Bill.

Jun 2, 2023, 8:00 AM
Treatment for severe rare disorder finally available, but screening is not – Rare Disorders NZ wants answers from Minister

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 for pre-symptomatic treatment of the degenerative disease.

May 10, 2023, 11:43 AM
‘Blind spot’ in health system due to lack of data on rare disorders

New report 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 their impact on the health system.

Apr 17, 2023, 1:55 PM
New global nursing network aims to improve health outcomes for rare patients

The network will act as a platform for nurses to share their experiences and to receive specialised education, with the vision of improving health outcomes for patients with rare diseases.

Apr 11, 2023, 12:45 PM
Pharmac’s ‘wait and see’ approach not good enough, says Rare Disorders NZ

Rare Disorders NZ is extremely disappointed to learn from Pharmac’s final response to the independent Pharmac Review that the drug-buying agency is waiting for Manatū Hauora to develop its Strategy for Rare Disorders rather than take immediate action to improve assessment pathways for modern rare disorder medicines to save lives.

Apr 4, 2023, 12:50 AM
Call heard to #GlowUpShowUp for Rare

Aotearoa heard our call to Glow Up and Show Up for Rare during the month of March, and what a month it was!

Mar 28, 2023, 11:11 PM
RDNZ extremely disappointed with Pharmac’s proposal to phase out funding of food thickeners

Rare Disorders NZ has made a submission to Pharmac’s review proposal to phase out funding of food thickeners, expressing disappointment with Pharmac’s proposal.

Mar 20, 2023, 8:30 AM
RDNZ has made a submission to the Pae Ora Health of Disabled People Strategy

Rare Disorders NZ has made a submission to the Pae Ora Health of Disabled People Strategy.

Mar 17, 2023, 10:29 PM
Celebrating rarity at the Rare Beer Challenge 2023

Basing a beer on the 90s cult movie The Big Lebowski turned out to be a winning idea for Heyday Beer Co, as they took out the top prize with their Lingonberry Pancake Ale at this year’s Rare Beer Challenge hosted by Fortune Favours on 10th March.