News
The latest updates from RDNZ and the rare disorder community.
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)”.
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.
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.
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.
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.
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.
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.
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.
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.
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.