The latest updates from RDNZ and the rare disorder community. 

Nov 28, 2023, 7:56 PM
Rare Disorders NZ wants new Minister for Pharmac to act swiftly to remove Pharmac Chair

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.

Oct 24, 2023, 1:45 PM
My Life Matters – putting medicine access on the election agenda

Everyone in New Zealand should have access to affordable and essential medicines. That was the shared vision at the heart of the My Life Matters campaign – a campaign led and supported by patient advocate organisations, including Rare Disorders NZ, representing more than 1 million patients in Aotearoa with cancers, rare disorders, diabetes, and other life limiting conditions.

Oct 11, 2023, 3:49 PM
Rare Disorders NZ appalled by attitude within Pharmac; calls for Chair’s removal 

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 between Pharmac executives regarding journalist Rachel Smalley.

Oct 3, 2023, 9:42 AM
Kua nekeneke atu e mātou ki te tari hou! RDNZ has moved into a new office!

The RDNZ team has moved premises and we were privileged to have Toa Waaka, mana whenua and of Ngāti Toa descent, open our new office space and gift us the interim name for the office: Te Toropaepae o te Kōtuku. It’s literal translation: “the perch of the Kōtuku (white heron)”. 

Sep 27, 2023, 3:10 PM
Making the invisible 300,000 Kiwis count 

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.

Sep 22, 2023, 12:21 PM
RDNZ presents to MSD Health and Disability Advisors about rare disorders

We were really excited to present at a professional development session with the Ministry of Social Development’s Regional Health and Disability Advisors this week, letting them know about Rare Disorders NZ and some of the challenges and barriers people living with rare disorders face when accessing support from Work and Income.

Sep 12, 2023, 2:07 PM
Rare Disorders NZ teams up with Whānau Āwhina Plunket to improve early identification of rare disorders in children

Rare Disorders NZ and Whānau Āwhina Plunket teamed up to design a course for Plunket nurses called Supporting whānau who experience rare disorders in Aotearoa. The course aims to upskill Whānau Āwhina staff in the early identification, referral and support of affected whānau with rare disorders.

Sep 2, 2023, 8:23 PM
Rare disorders omission from cabinet paper concerning, says 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 once been mentioned as a priority population group in a recently released cabinet paper on the Minister of Health’s vision for primary and community healthcare in Aotearoa.

Aug 15, 2023, 1:30 PM
COVID-19 restrictions lifted too soon, says 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.

Jul 17, 2023, 12:53 PM
Rare Disorders NZ meets with Minister of Health

Rare Disorders NZ Chief Executive Chris Higgins and Board Chair James McGoram had a constructive meeting with Minister of Health Hon. Dr Ayesha Verrall in June; the first between Rare Disorders NZ and the new health minister.