The latest updates from RDNZ and the rare disorder community. 

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.

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.