Rare Disorders NZ

06/10/2026

There’s exactly one month until the general election and the campaign is really ramping up!

Where do the major parties stand on issues important to the rare disorder community? Find out on our website...

30/09/2026

Do you receive disability supports and have you had a recent needs assessment or review?

Carers NZ have been getting mixed feedback about how this is going around the country for disabled people and family carers, so they’re keen for you to take this quick survey to help them understand what’s going on.

https://www.surveymonkey.com/r/WG8R7QT?fbclid=IwY2xjawUqXgBleHRuA2FlbQIxMQBwZG9mAXNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR6LTA5zUgMJC6nzimQ50luHneKzvjx1yMHz6uhnkWvOKk67r8YJVAubAxth2w_aem_z9VFjhTw2Hmh8f9Hh0u-Nw

Take this survey powered by surveymonkey.com. Create your own surveys for free.

29/09/2026

The Electoral Commission are hosting accessible online information and Q&A sessions in September and October about enrolling and voting in the general election.

These sessions are designed for Deaf and disabled people, carers, whānau, and community.

During the session, they’ll talk about:
➡what is different this election
➡how to enrol
➡how to vote
➡what support is available for disabled people
➡your questions.

All sessions will include captioning, and an NZSL interpreter will be present.

You can register for one of the below sessions via the link in comments:

Session 1 - Wednesday 30 September, 1:00 - 2:00pm
Session 2 - Thursday 15 October, 6:00 - 7:00pm
Session 3 - Tuesday 20 October, 6:00 - 7:00pm

22/09/2026

10,000+ voices. 1 clear message. Fund the medicines New Zealanders need.

Yesterday on a wet Wellington day we stood alongside patients and patient organisations outside parliament as the Forbidden Pharmacy open letter was handed directly to political representatives by breast cancer patient and advocate Amanda Broughton.

Political parties were represented by Hon David Seymour (ACT), Ricardo Menéndez March (Green), Hon. Ayesha Verrall (Labour), Hon. Simeon Brown (National), Hon Winston Peters (NZ First) and Jessica Hammond (TOP).

New Zealand spends less on medicines relative to GDP than any country in the OECD. 95% of modern medicines don’t reach our shelves.

New Zealanders deserve better. This election, we want to see political parties commit to finally addressing the medicine gap.

The lives of the New Zealanders they represent depend on it

21/09/2026

Meet Flynn Maguire.

Flynn lives with an inherited RPE65 retinal disease that causes progressive vision loss. The gene therapy he needs is called Voretigene neparvovec-rzyl. It is funded in many countries, including Australia and the UK, but not in New Zealand.

Flynn's story is one of thousands. This is why Rare Disorders NZ is part of the Forbidden Pharmacy campaign - and why we're calling on the next government to give Kiwis access to the medicines they need.

Watch Flynn's story, share it and ask your MP where they stand.

www.forbiddenpharmacy.org

18/09/2026

We're almost at 11,000 signatures!

Stand with 600,000 New Zealanders who need medicines they can’t get. Sign the open letter today 🧡

16/09/2026

It’s Te Wiki o te Reo Māori (Māori Language Week)! It’s a great reminder to give te Reo Māori a go in everyday activities to contribute to normalising the language in daily interactions.

For many living with rare disorders, you can feel very different from one day to the next. Below are some different ways you can respond to Kei te pēhea koe? (How are you?)

Adding a few more ways to answer “Kei te pēhea koe?” to the Te Wiki kete 💚

Because how we’re feeling changes from day to day, and having a few more ways to express it gives us more reo to reach for in those everyday kōrero 🌱

Save this one for Te Wiki and see how many you can bring into your conversations! 📲

14/09/2026

Rare Disorders NZ added our support to a letter from the AGenDA coalition (Against Genomic Discrimination Aotearoa) to Hon Simeon Brown, Minister of Health, and Hon Cameron Brewer, Minister of Commerce and Consumer Affairs calling for consultation on genomic discrimination in insurance to begin before the end of 2026.

The letter was supported by a range of rare disorder support groups, organisations, individual health professionals, researchers, genetic counsellors, legal experts, patient leaders and people with lived experience and individuals.

Why is this important? In New Zealand insurers can use genetic test results to increase premiums, exclude related conditions, restrict cover or decline an application.

Genetic testing is increasingly used to diagnose rare disorders, identify inherited risks, guide treatment and enable prevention and earlier diagnosis. People should not have to fear that following medical advice and obtaining potentially life-saving information could make insurance more expensive or difficult to obtain.

Comparable OECD countries have addressed this issue, and the only thing standing in the way of beginning the consultation process in New Zealand is political will.

How can you help? You can download a template letter from our website to contact your local MP and ask them to support the commencement of consultation.

10/09/2026

17 patient organisations representing people affected by cancer, rare disorders and chronic health conditions are calling on the next government to fund the medicines New Zealanders need.

Over the past decade, 477 modern medicines have been launched globally, but just 24 have been funded here. New Zealanders deserve better.

Sign the open letter today to show political parties that this is an issue they cannot ignore.

10/09/2026

Have you heard of .nz ❤️

TimeOut helps people facing stage 4 or advanced cancer, or another incurable illness, spend some much-needed time together with the people they love.

Thanks to the generosity of holiday homeowners across Aotearoa, every TimeOut Stay is completely free – offering families space and time to simply be together, rest and reconnect.

If you or someone you know could benefit from a TimeOut Stay, find out more about eligibility and how to apply at www.timeoutnz.org.