The latest updates from RDNZ and the rare disorder community. 

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.

Mar 1, 2024, 12:34 PM
White paper launch receives interest across political spectrum

On the eve of Rare Disease Day, a wide range of rare disorders stakeholders gathered together for the launch of the latest Impact of Living with a Rare Disorder in Aotearoa New Zealand white paper at parliament, including MPs from across the political spectrum and three Ministers.

Mar 1, 2024, 11:38 AM
Rare disorders researchers connect and share knowledge

From clinical practice to therapeutic development and health systems delivery, we, in collaboration with Wellington Univentures and Victoria University of Wellington, brought together experts from a wide range of fields on the eve of Rare Disease Day who all share in common their interest and expertise in rare disorders.

Feb 29, 2024, 3:11 PM
RDNZ welcomes Pharmac’s expansion of the parallel assessment pathway

Rare Disorders NZ welcomes Minister Seymour’s announcement that Pharmac are changing how they accept funding applications for new medicines to speed up the assessment process.

Feb 28, 2024, 9:00 AM
#GlowUpShowUp: rarest day marks launch of Rare Disorders Month 2024

As forty-five buildings across the motu glow up for rare disorders tomorrow, Rare Disorders Month will kick off to unite Aotearoa in pushing for impactful health reform.

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.