News
The latest updates from RDNZ and the rare disorder community.
Rare disorder community celebrates Aotearoa’s first Rare Disorders Strategy
Today’s release of Aotearoa New Zealand’s first Rare Disorders Strategy marks a significant moment for people living with a rare disorder, their whānau, patient support groups and patient advocates who have been calling for this for decades.
RDNZ invited to release of Letter of Expectation to Pharmac
Patient advocacy organisations, including Rare Disorders NZ, were invited to attend the release of Associate Health Minister David Seymour’s letter of expectation to Pharmac’s new Chair Paula Bennett.
Patient advocates meet with Labour to discuss medicine access
Rare Disorders NZ along with other patient advocates met with Labour health spokesperson and former Minister of Health Hon. Dr. Ayesha Verrall and her colleagues Rt Hon Adrian Rurawhe and Camilla Belich on 16 July at a meeting organised by Patient Voice Aotearoa.
Briefing on medicine access issues for rare sent to new Pharmac Chair
Rare Disorders NZ wrote to Pharmac's new chair Paula Bennett to congratulate her on her new role, introduce our organisation and brief her about rare disorders and medicine access issues in New Zealand.
Rare disorder patients desperate to know if their medicines will be funded in new Pharmac budget allocation
Rare Disorders NZ welcomes the announcement that more funding has been allocated to Pharmac’s medicines purchasing budget but is deeply frustrated that there is a lack of clarity around what the additional 28 medicines to be funded will be.
Call for Expressions of Interest in new Rare Disorders Research Network Development Group
Rare Disorders NZ is establishing a Rare Disorders Research Network Development Group to support the establishment, growth and evidence-based and whakaaro Māori impact of a network of Aotearoa New Zealand rare disorders researchers.
Call for Expressions of Interest in new Clinical Advisory Panel
We are seeking expressions of interest from New Zealand rare disorders clinicians (including nurses, allied health professionals, and general and specialist medical practitioners) who would like to be part of a clinical advisory panel to provide expert advice to RDNZ’s Board and staff.
Funding all medicines on waitlist the only fair solution to election bribe blunder, says Rare Disorders NZ
Rare Disorders NZ is dismayed about how poorly the election promise to fund 13 new cancer medicines has been handled and expects the Government to recognise the only solution to remedy the harm caused is to increase Pharmac’s funding by at least the $490 million per year needed to fund all the medicines on the Options for Investment list.
RDNZ backs call for the full reversal of disability support restrictions
Rare Disorders NZ has, along with 51 other organisations, signed an open letter calling for the full reversal of disability support restrictions and for disabled people to have the resources and the flexibility needed to thrive.
Key stakeholders brought together for inaugural Medicines Access Summit
On 29 and 30 April, Rare Disorders NZ attended the inaugural Valuing Life Summit at parliament, organised by Patient Voice Aotearoa and Medicines New Zealand and hosted by the Honourable David Seymour, Associate Minister of Health (Pharmac).