Rare Disorders NZ December 2025 update
23 Feb 2026
| Message from the Chief Executive Kia ora koutou katoa, It is wonderful to conclude the year with a particularly noteworthy win – the Minister of Health’s commitment to getting the implementation of the Rare Disorders Strategy underway (which you can read more about below). This achievement was the result of strong and persistent advocacy, lots of input and engagement from our support group collective and of course our petition, which we are so grateful so many of you supported. We look forward to the new year as our focus shifts to the next phase of implementation – holding the agencies to account to ensure meaningful systemic changes are implemented without delay. We are as always so grateful for our community and network’s support and engagement, which buoys us along in the more challenging moments and drives our determination to achieve for rare. Together we have made great strides towards our vision of the best possible health and wellbeing for people and whānau living with rare disorders in New Zealand/Aotearoa. From the team at RDNZ we wish you all the best for a Meri Kirihimete/Merry Christmas and we look forward to reconnecting with you all in the New Year. Ngā mihi Chris Chief Executive |
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| Minister of Health commits to Rare Disorder Strategy implementation On 11th November Rare Disorders NZ achieved a major milestone on the path to getting the Rare Disorders Strategy implemented. At Rare Disorders NZ’s request, the Minister of Health hosted a Roundtable meeting with Rare Disorders NZ and the agencies responsible for implementing the RDS: the Ministry of Health, Health New Zealand, Pharmac, and Health Quality & Safety Commission, to discuss advancing the implementation of the Rare Disorders Strategy (RDS). Health Select Committee Chair Sam Uffindel MP and Act Spokesperson for Health Todd Stephenson MP were also present. Prior to the meeting, Rare Disorders NZ made our expectations clear and stipulated four outcomes we wanted to see achieved at the meeting. The Minister agreed these were reasonable, directing the officials present to respond to the four requests. Read more on our website here. |
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| New Zealand to host new ERDERA National Mirror Group On 16th December New Zealand was the first Southern Hemisphere non-European country to be recognised by the European Rare Diseases Research Alliance (ERDERA) as a host of an affiliated National Mirror Group (NMG). This is huge for rare disorders research in New Zealand as it formally connects the research community here with rare disorders research networks in both Europe and globally. Read more here. |
 | Episode two of Rare Aware podcast available now In our latest episode of Rare Aware we sit down with Lisa Underwood — health researcher, advocate, and a dedicated voice in the Tuberous Sclerosis Complex community. Lisa shares her journey into rare disorder research, the realities families face, and what she’s uncovering through her work in the Rare Disorders NZ research network. Access episode here. |
| Pharmac will not proceed with cutting medicines waitlist Pharmac has decided not to proceed with a proposal to decline some low-ranked applications on the Options for Investment list, based on the feedback they received during the consultation process. Rare Disorders NZ, along with many other stakeholders, made submissions on the consultation strongly opposing the proposal. Read more here. |
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| Your support keeps the momentum going As you celebrate the festive season, please consider making a donation to help us continue fighting for rare. Your kindness this Christmas brings hope to thousands of New Zealanders living with rare disorders. From all of us at Rare Disorders NZ, thank you for standing with us. |
