The latest updates from RDNZ and the rare disorder community. 

Jun 18, 2024, 11:17 AM
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.

Jun 18, 2024, 10:48 AM
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.

Jun 13, 2024, 11:00 AM
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.

May 16, 2024, 12:08 PM
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.

May 14, 2024, 10:33 AM
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).

Apr 29, 2024, 10:45 AM
Unique insights to unique issues win our essay competition

We were blown away by many of the entries to the essay competition for medical and nursing students we ran during Rare Disorders Month.

Mar 21, 2024, 10:18 AM
New changes to support funding further deprive disabled Kiwis of choices and opportunities, says Rare Disorders NZ

Rare Disorders NZ is alarmed that the Minister for Disability Issues is blaming carers for misusing support funding intended for their children as a reason for Whaikaha suddenly tightening how disability support funding can be used, without any consultation with the disabled community.

Mar 19, 2024, 12:48 PM
Pharmac-initiated lengthy review a waste of valuable time and resources, says Rare Disorders NZ

Rare Disorders NZ is very concerned that Pharmac will not extend access to life-saving medicines for children with rare disorders in line with child cancer patients under Rule 8.1b, despite Pharmac concluding from its own review the real impact on treatment and health outcomes this rule has for patients.

Mar 11, 2024, 1:42 PM
Rare Beer Challenge 2024

For the second year running Heyday claimed victory at the annual Rare Beer Challenge at Fortune Favours on 8th March.

Mar 2, 2024, 1:33 PM
Celebrating the invaluable work of support group leads

On the very rarest of Rare Disease Days, 29 February, Rare Disorders NZ could not imagine a more fitting way to mark the day than by bringing together support group leads from across the country for a morning tea to acknowledge the invaluable work they do providing guidance, support and friendship to so many people living with rare disorders in Aotearoa.