Rare Disorders NZ

07/09/2026

Which political parties are committed to better care for rare?

We asked all the major political parties where they stand on issues important to the rare disorder community.

Most have responded. We hope the others will respond soon.

Check out our website to see each party’s position on our 7 strategic priorities.

07/09/2026

New Zealand has one of the lowest levels of publicly funded access to medicines among comparable countries.

With the election fast approaching, this is our opportunity to send a clear message to the next Government that New Zealanders expect better access to the medicines they need.

We’ve joined with 16 patient organisations to write an open letter to the future government calling for change, and thousands of New Zealanders have already added their names.

We need your help to reach 10,000+ signatures before the letter is presented to the main political parties on the steps of Parliament.

If you’ve already signed, please share the letter with your friends, whānau and networks and encourage them to add their names, too.

03/09/2026

Trinity’s story is a heartbreaking example of what can happen to somebody with a rare disorder who ends up on the diagnostic odyssey when we don’t have the right systems and services in place.

“...there’s one thing the public system could have done differently to prevent years of suffering. The genetic testing that provided the breakthrough diagnosis was done privately, at their own expense, only after no other explanation for her symptoms could be found... It changed the trajectory of Trinity’s life.”

Genetic testing cannot be underestimated for the difference it can make to someone’s life.

The whole genome sequencing pilot project launched earlier this year by Health NZ is a good start to improving New Zealand’s diagnostic capabilities.

We would like to see it expanded along with the development of clinical care pathways for rare disorders, so that people like Trinity can receive an earlier and accurate diagnosis and a planned pathway for their clinical care.

Trinity Hutchins was accused of secretly siphoning blood from a line into her chest and using it to fake blood in her vomit. The accusation was wrong - she was very unwell with a rare disorder.

28/08/2026

The latest Rare Aware podcast episode is now live!

In this episode of Rare Aware, we sit down with Denise Astill who 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 done to prevent childbearing people from going through the same heartache of having their babies harmed by anti-seizure medicines during pregnancy.

This episode is available on our website and on all major podcast platforms.

27/08/2026

The Forbidden Pharmacy film is here.

This is the story of medicines New Zealand needs, told by the patients who need them.

Watch it. Share it. Sign the open letter to show your support. (Link in comments.)

24/08/2026

Disability Connect's annual Transition Expo is taking place on 9 September in Auckland for anyone interested in what is possible for life after school for kids with disabilities. Entry is free.

21/08/2026

Unlike in many other OECD countries, in New Zealand insurers can legally ask for and use genetic and genomic test results to make decisions about the level of insurance cover they are willing to provide to individuals.

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.

Our CE Chris went along to parliament on Wednesday to support AGenDA co-leads Prof Andrew Shelling and Fay Sowerby when they spoke to the Health Committee calling for the Government to begin the long-promised consultation process on legal safeguards against genetic discrimination.

You can support this call too, by writing to your local electorate or list MP, asking them to support the commencement of consultation. Link to a template letter in comments.

10/08/2026

For many people living with a rare disorder, the medicine they are waiting for is not a better or more convenient option than what they currently have. They are waiting for their only treatment option.

Ryan is one of those people. He lives with Spinal Muscular Atrophy, and the medicine he needs is funded, but not for his age group.

Ryan O’Rourke is calling for treatment for spinal muscular atrophy to be extended to adults, warning that every month of delay risks function he may never regain.

07/08/2026

Rare Disorders NZ, along with the NZ ERDERA National Mirror Group establishment team and the RDNZ Rare Disorders Research Network leadership group were thrilled to host a two-day Rare Disorders Research Forum in Christchurch this week.

The Forum provided rare disorders researchers and stakeholders from around Aotearoa New Zealand and abroad an important opportunity to strengthen connections and determine how the rare disorders research space can best expand and thrive. Developing the infrastructure, capacity, international connectedness and funding for rare disorders research are all essential elements to this.

The rare disorders research sector is an exciting space full of passionate individuals committed to contributing to improving the health and wellbeing of people living with rare disorders and it is wonderful to provide these opportunities to connect and collaborate.

Thank you to Dr. Hamish Campbell MP, Chair of the Cross-Party Parliamentary Group on Rare and Undiagnosed Disorders for opening the event, and to everyone who attended from near and far.

04/08/2026

The Human Genetics Society of Australasia’s 49th Annual Scientific Meeting concluded yesterday after an impressive four day programme, which 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.

Our CE Chris Higgins spoke at a themed plenary 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.

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.