Rare Disorders NZ

Rare Disorders NZ Donate today: raredisorders.org.nz We help people affected by rare disorders and their families find essential information and support.

RDNZ is the respected voice of rare disorders in New Zealand and is the only national organisation supporting all New Zealanders who live with a rare condition and the people who care for them. We also monitor rare disorder issues and policy in New Zealand, and build partnerships between patients and support groups, clinicians, researchers, policy-makers and industry. RDNZ greatly appreciates donations through One Percent Collective: https://www.onepercentcollective.org/charity-partner/rare-disorders-new-zealand
or
Givealittle: https://givealittle.co.nz/org/rare-disorders-nz

Your lived experiences drive our advocacy work at every level of the government's decision-making process.
17/12/2025

Your lived experiences drive our advocacy work at every level of the government's decision-making process.

New Zealand is the first Southern Hemisphere non-European country to be recognised by the European Rare Diseases Researc...
17/12/2025

New Zealand is 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.

The NMG had its first meeting on 16th December comprising, as pictured, the NMG project group, NZRNLG members, and representatives from Rare Disorders New Zealand and Pharmac.

17/12/2025

We are thrilled to share that Pharmac has decided not to proceed with a proposal to decline some low-ranked applications on the Options for Investment list!

Rare Disorders NZ, along with many other stakeholders, made submissions on the consultation strongly opposing the proposal. Because of the feedback they received, they decided not to proceed.

Another great win as the year comes to a close!

“The Ministry has committed to a Framework for Action proposed by IHC that addresses education system barriers for disab...
12/12/2025

“The Ministry has committed to a Framework for Action proposed by IHC that addresses education system barriers for disabled students. We will work with a stakeholder group including representatives from the disability sector, Māori and Pacific representatives and whānau to ensure lived experience informs the Ministry’s work” - Secretary for Education Ellen MacGregor Reid.

An important agreement signed last night between IHC and the Government to improve the education system for disabled students.

The Ministry of Social Development (MSD) wants your feedback on the draft Carers' Strategy Action Plan.Led by MSD, a new...
09/12/2025

The Ministry of Social Development (MSD) wants your feedback on the draft Carers' Strategy Action Plan.

Led by MSD, a new draft 'rolling' Carers' Strategy Action Plan has been developed in partnership with the Carers Alliance and an Advisory Group of organisations representing the needs of carers. Unlike previous Action Plans, the rolling Action Plan will not have an expiry date.

It has been designed to help address the challenges faced by carers over time and can be built on and updated regularly.

Rare Disorders NZ will be putting a submission into the MSD consultation on the draft Carers' Strategy Action Plan.

If you would like Rare Disorders NZ to incorporate your feedback into our submission to MSD, please fill in our google form by 26 January 2026: https://forms.gle/mJZ962NuTZ6J6h7JA

You can also provide feedback directly to MSD by 12 February 2026. You can email a submission, fill in MSD's survey, or join a community or online workshop. Details of these options and the draft Action Plan can be found on MSD's website here: https://tinyurl.com/mud239u6

Episode 2 in our Rare Aware podcast series is out now! In this episode we sit down with Lisa Underwood — health research...
08/12/2025

Episode 2 in our Rare Aware podcast series is out now!

In this episode 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.

We dive into the challenges, the gaps, the moments of hope, and the power of lived experience guiding real change.

Whether you’re part of the rare community, a supporter, or simply curious, this conversation sheds light on why understanding rare disorders matters more than ever.

A warm, insightful, and empowering kōrero you won’t want to miss.

Available on our website under the News tab or on any major podcast platform.

Rare Disorders NZ is so proud to represent YOU, the rare disorder community. We know the challenges you are up against e...
01/12/2025

Rare Disorders NZ is so proud to represent YOU, the rare disorder community.

We know the challenges you are up against every day are many. We know that not all days are the same, and often it is hard to know what to expect from one day to the next. Sometimes when one challenge is overcome, another one emerges. We know how tiring it can be having to explain your situation over and over again. And having to make your daily life work in a ‘one-size-fits-all’ world.

Many of our staff and board members have their own lived experience with rare disorders, so we get it on a personal level too. We all have a deep commitment and passion to make Aotearoa New Zealand a better place for people living with rare disorders.

The immense resilience, strength and courage of the rare disorder community buoys us every day, and the Minister of Health’s most recent commitment to get work underway on the implementation of the Rare Disorders Strategy is an example of how our strong and persistent advocacy is working to get action.

Today is Givealittle day. Every dollar given to Rare Disorders NZ through the Givealittle platform today is exempt from platform fees – we get every cent of every dollar donated.

If you have been thinking about donating to a charity today, or in the lead up to Christmas, please consider Rare Disorders NZ so we can continue to build on the progress we have made to improve the health and wellbeing of Kiwis living with rare disorders.

Thank you – your support means the world. 🧡

Link to our Givealittle page in comments below.

“Please be assured that agencies are well aware of my expectations that they will take deliberate, planned steps towards...
01/12/2025

“Please be assured that agencies are well aware of my expectations that they will take deliberate, planned steps towards the priorities of the Strategy and demonstrate progress year on year.

I commend Rare Disorders NZ’s advocacy and support for people and families who live with a rare disorder. We can look forward more confidently to seeing real progress for people with rare disorders in the coming months and years.”

– Hon Simeon Brown, Minister of Health.

26/11/2025

The Voice of Rare Disorders Survey is closing THIS Sunday. If you, or someone you care for, lives with a rare disorder please take a moment to complete it if you haven't already. Your voice is important!

RDNZ was at parliament today in support of the Buller Declaration petition handover, led by Patient Voice Aotearoa. The ...
18/11/2025

RDNZ was at parliament today in support of the Buller Declaration petition handover, led by Patient Voice Aotearoa. The petition – with over 90,000 signatures, calls for urgent action to address the broken health system.

Address

PO Box 7081, Newtown
Wellington
6242

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm

Website

https://raredisorders.org.nz/get-involved/survey-2025/

Alerts

Be the first to know and let us send you an email when Rare Disorders NZ posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Our Story

The New Zealand Organisation for Rare Disorders (NZORD) was established in September 2000, and changed its name to Rare Disorders NZ (RDNZ) in 2019. RDNZ offers a central starting point for patients and families affected by rare disorders, and helps families, patients and healthcare providers find essential information and support groups.

RDNZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 400,000 Kiwis with a rare condition.