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

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.

18/11/2025

Pharmac is proposing to shorten its medicines waitlist - the 'Options for Investment (OFI) list' by removing the lowest ranked 20% on the list, to provide consumers with more clarity about the status of medicines.

Rare Disorders NZ firmly opposes this proposal. The underlying issue is an inadequate medicines budget, not the length of the OFI list.

"New Zealand should not have to maintain a waiting list for essential medicines. We urge Pharmac to prioritise meaningful reform of the health technology assessment process, clear the existing application backlog, and actively advocate for a significantly higher medicines budget to meet the needs of all New Zealanders, not just remove medicines from a long waiting list to hide the depth of unmet need." - RDNZ submission.

We have made a submission to the consultation as well as endorsed a joint statement along with 51 other consumer and patient representative groups strongly opposing this proposal.

You can read our submission as well as the joint statement on our website (link below).

17/11/2025

Caring for a child with a rare disorder is a unique experience that can be challenging. Tell us how services and supports could improve to support your whānau's journey. Take the Voice of Rare Disorders Survey today.

13/11/2025

Do you care for someone with a rare disorder? Make sure you fill in the Voice of Rare Disorders Survey - just like Lachlan's family. 🧡

Link to survey in comments below.

11/11/2025

Yesterday senior officials representing the agencies responsible for implementing the Rare Disorders Strategy came together with us, in the Minister of Health’s office, to discuss the implementation of the Rare Disorders Strategy.

This meeting marked a significant milestone in our work to get the Strategy implemented, and we are optimistic it is a turning point for the implementation of the Rare Disorders Strategy.

We are awaiting a letter confirming the meeting’s outcomes and look forward to sharing the details with you as soon as we receive this.

In the meantime, we must acknowledge this milestone as another example of the power of strong patient advocacy, without which this meeting would never have happened.

Rare Disorders NZ is proud to represent YOU, the rare disorder community, and grateful for your unwavering support. Your strength and resilience inspire and drive us to persistently fight for a system that is fair for rare. We will not settle for less.

10/11/2025

Some of the RDNZ team beaming in to remind you that we want you to take our survey!

Your responses are so valuable to the work we do advocating for improved services for rare.🧡

It is wonderful to share that New Zealand's one and only Rare Beer Challenge will be back again in 2026 - whoop whoop! W...
04/11/2025

It is wonderful to share that New Zealand's one and only Rare Beer Challenge will be back again in 2026 - whoop whoop!

We're extremely grateful to 16 TUN in Auckland for enthusiastically taking over the reins. It will be a new chapter for the RBC being hosted in our biggest city and we're excited that Aucklanders will for the first time be able to explore the full line up of amazing rare beers on offer!

Fear not loyal Wellingtonian rare beer enthusiasts. We hope to announce a Wellington satellite venue soon! Stay tuned!

04/11/2025

Good news! We have extended the closing date for the Voice of Rare Disorders Survey to 30 November! Be heard and make a difference.

Thank you so much to Ursula for running for rare at the Auckland Marathon yesterday and raising over $1,600 for Rare Dis...
03/11/2025

Thank you so much to Ursula for running for rare at the Auckland Marathon yesterday and raising over $1,600 for Rare Disorders NZ, exceeding her goal! What an amazing achievement!

Reflections from Ursula:

“Race day was incredible - absolutely perfect weather, fantastic energy, and an unforgettable experience. The Harbour Bridge climb reminded me that every challenge is worth it for the amazing view at the top. I’m so proud to have run in support of Rare Disorders NZ, helping to raise awareness and funds for an amazing cause close to my heart. A huge thank you to everyone who’s supported me along the way - your generosity makes a real difference! I'm thrilled to have finished the race well, AND reached my fundraising target. You can still share the link and donate to this excellent cause. Kia ora ###”

Inspired? Check out the upcoming sporting events around the country that you can participate in and raise money for rare! Link below in comments.

29/10/2025

If you've been putting off taking the Voice of Rare Disorders Survey, now's good! The survey closes tomorrow - you don't want to miss out on getting your voice heard.
Thank you so much for participating!

26/10/2025

There's still time but don't delay! The Voice of Rare Disorders Survey is closing THIS FRIDAY!

Address

PO Box 7081, Newtown
Wellington
6242

Opening Hours

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

Website

https://rdnz.nationbuilder.com/petition, https://raredisorders.org.nz/get-involved/sur

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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.