Rare Disorders NZ August 2026 update
1 Sep 2026
 | Pānui August 2026 |
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| Kia ora koutou katoa It’s been another period of progress since the last newsletter, with the release in late July of the Rare Disorders Strategy Implementation Plan for July 2026 – June 2027 being of particular significance. This is something that RDNZ has been advocating for ever since the publication of the Rare Disorders Strategy (RDS) back in July 2024, and was developed by representatives of the RDS implementation agencies, including RDNZ. The document includes specific things that have to be actioned or progressed over the next twelve months including creation of a rare disorders clinical reference group, data collection for 7000 specific rare disorders, developing pathways for rare disorders medicines, piloting whole genome sequencing in the public hospital system for diagnosing rare disorders, and developing internationally connected rare disorders research infrastructure. A meeting to review progress is to occur in November, and progress against the plan is to be published annually by the Manatū Hauora | Ministry of Health. RDNZ is taking the lead on implementing the rare disorders research parts of the RDS. We hosted a successful two days rare disorders research forum in early August with presenters from New Zealand, Australia and the UK talking about translating research results into practice, using and developing rare disorders data for research, rare disorders research networks locally and globally, and similarities and differences between Māori and non-Māori in their experiences of the health, disability and other support systems. Feedback from delegates was very positive with this comment typical of responses: “….networking and learning who is doing what in the rare disease space. It was also a great idea to share good practices with the Australian rare disease community. Continue to organise these types of events. The 30-minute talks were long enough to explore different topics in depth, while allowing time for discussion and exchange after” Last but not least the RDNZ Board has appointed what we believe is its first ever Māori Advisory Group. Initially comprising six members the group had its first meeting last week, with a further three potential new members also participating. After the Board has confirmed final numbers and members we’ll be able to let everybody know who they are. We’re looking forward to drawing on this new group’s advice as we seek to be a better tiriti partner, and ensure that no-one, including Māori, is left behind as we implement the Rare Disorders Strategy and improve experiences and outcomes for all New Zealanders living with a rare disorder. Ngā mihi, Chris Higgins Chief Executive |
| First Rare Disorders Strategy implementation plan published On 24th July 2026 the Ministry of Health published the Rare Disorders Strategy Implementation Plan 2026/27, almost two years to the day that the Rare Disorders Strategy was launched. The Implementation Plan outlines how the health agencies responsible for implementing the Strategy will work towards improving support for people and whānau living with rare disorders over the next year. Rare Disorders NZ determinedly pursued an implementation plan following the release of the Rare Disorders Strategy and will be meeting every 6 months with the implementation agencies to check in on progress, and work collaboratively to develop implementation plans for the following years. Read more here. |
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| The Forbidden Pharmacy Rare Disorders NZ has joined forces with 16 other patient organisations to make medicine access an election issue through a campaign called The Forbidden Pharmacy. This campaign calls on the future Government to commit to a medicines budget that reflects the size of our population and the scale of our need, so New Zealanders have access to the same modern medicines as people in other comparable countries. The launch of the campaign featured an installation of a pharmacy at Shed 10 stocked with medicines that New Zealanders cannot access. It opened to politicians and the media on Friday 24th July in Auckland and to the public on Saturday, July 25, for one day only. The campaign also features stories of 16 patients who cannot access the life-changing medicine they need in New Zealand. You may see their stories pop up on TV this week, on social media and on billboards around the country. You can support the campaign by signing the open letter to all political parties here. Learn more here. |
 | Rare Disorders Research Forum On 5th and 6th August Rare Disorders NZ, along with the NZ ERDERA National Mirror Group establishment team and the RDNZ Rare Disorders Research Network leadership group hosted a two-day Rare Disorders Research Forum in Christchurch. Learn more here. |
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| RDNZ at the Human Genetics Society of Australasia’s 49th Annual Scientific Meeting On 4th August Chris spoke at a themed plenary at the Human Genetics Society of Australasia’s 49th Annual Scientific Meeting in Christchurch about the importance of consumer voice, and how our biennial surveys of the rare disorder community are one of the important ways we capture the voice of those with lived experience to support our advocacy work. The impressive four day meeting programme covered a wide range of topics in human genetics, including treatment frontiers for genetic conditions, tools to improve diagnosis for all and the future of human genomics. We were grateful to also have a space at the conference alongside other charities to share our work, which provided a great connection point to those interested in rare disorders. |
| Pushing for an end to genetic discrimination in insurance cover Rare Disorders NZ is part of the coalition AGenDA (Against Genomic Discrimination Aotearoa) which strongly advocates for protections against the use of genetic and genomic test results in insurance underwriting in New Zealand. On 19 August AGenDA co-leads Prof Andrew Shelling and Fay Sowerby spoke to the Health Committee calling for the Government to begin the long-promised consultation process on legal safeguards against genetic discrimination. Our CE Chris went along to parliament on Wednesday in support. You can support this call too, by writing to your local electorate or list MP, asking them to support the commencement of consultation. You can find more information and a template letter here. |
| Shop Rare Disorders NZ merchandise Proudly show your support for the rare disorder community. Visit our Digitees online shop to purchase a range of Glow Up and Show Up and Rare Disorders NZ products. |
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| We have written to all major political parties asking where they stand on our seven stratgic priorities for improving the health and wellbeing of people living with rare disorders. We are publishing the responses on our website as they come through. You can view them here. As the election nears it is a great time to book in to see your electorate MP. Your voice and your concerns matter to them – they want your vote! Meeting with your local MP is a powerful way you can get your voice heard at the highest levels. On our website you can find a template letter to contact your MP and a list of current MPs who hold portfolios relevant to rare disorders. |
 | Latest podcast episode of Rare Aware is now available In episode 3 we sit down with Denise Astil. Denise was made an Officer of the New Zealand Order of Merit (ONZM) in the 2025 New Year Honours for her services to the prevention of foetal anticonvulsant syndromes. Her story starts at the age of 16 when diagnosed with epilepsy. Denise never thought that years later her anti-seizure medicine would have such devastating results with lifelong consequences. Her very much wanted and planned IVF babies were harmed by her antiseizure medicine (valproate) during pregnancy. Listen to Denise's journey and the incredible work she has made for whānau in New Zealand here. |
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| Submissions Submission on the further improvements to Disability Support Services |
 | Thank you Jack Jeffs Charitable Trust COGS (Papakura / Franklin, Rodney / North Shore, Kirikiriroa / Hamilton City, Waikato West, South Waikato, Whitireia, Wellington) |
