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

It’s a new school year and a new chance to get your school or kura to show their aroha this March for families affected ...
03/02/2026

It’s a new school year and a new chance to get your school or kura to show their aroha this March for families affected by rare disorders in the local community!

Encourage your school to kickstart the year with a fun gold coin dress up day or colour run! We have some neat resources on our website for inspiration.

Are you planning an event in March to mark Rare Disorders Month? Order free temporary tattoos from Rare Disorders NZ by ...
02/02/2026

Are you planning an event in March to mark Rare Disorders Month?

Order free temporary tattoos from Rare Disorders NZ by emailing RDNZadmin@raredisorders.org.nz.

Gather your colleagues, family, clients or mates and sign up for an unforgettable afternoon on the water! Experience the...
27/01/2026

Gather your colleagues, family, clients or mates and sign up for an unforgettable afternoon on the water!

Experience the thrill of racing aboard MRX yachts with your team, followed by drinks, prize giving and stories from the day — all hosted at 16 Tun, North Wharf.

No sailing experience required!

Your support will help raise vital funds for Rare Disorders NZ, enabling greater awareness, advocacy, and support for thousands of Kiwis and families navigating life with a rare condition.

Enter your team of 6 and secure one of just 11 boats available to take part in this fundraising regatta. Each yacht comes with a volunteer skipper.

When: 25 March, 12 – 5.30pm

Where: Auckland Harbour \ 16 Tun 10–26 Jellicoe Street, North Wharf, Auckland
(Pre-race briefing and post-race hospitality will be held at 16 Tun.)

Team entry fee: $3,500 + GST

This event is proudly hosted and supported by 16 Tun. Email ewen@16tun.co.nz to request an invoice or secure your spot.

Please note: Sailing can be physically demanding. Your skipper will guide you, but participants should be prepared for movement around the boat and may feel it the next day!

Get ready to this March with some of our awesome branded gear!Shop and Support rare disorders at Digitees today 🤩
21/01/2026

Get ready to this March with some of our awesome branded gear!

Shop and Support rare disorders at Digitees today 🤩

15/01/2026

Raise your heart rate and funds for Rare Disorders NZ by signing up to one of the great community running events coming up around the motu.

You can create your own fundraising page through Grassrootz and get your networks supporting your efforts!

Find out more via the link in comments.

A new year often brings renewed motivation to get your affairs in order.If you are considering using this time of reflec...
13/01/2026

A new year often brings renewed motivation to get your affairs in order.

If you are considering using this time of reflection to update your Will, create a new Will or even set up an Enduring Power of Attorney (EPA), you might find it helpful to know that we have teamed up with Public Trust to offer our supporters 20% off online Wills and EPAs.

Learn more via the link in comments.

11/01/2026

Happy New Year!

The team at RDNZ are back and hitting the ground running planning for Rare Disorders Month in March.

If your business, school or community group would like to get involved with our annual awareness campaign for rare disorders please get in touch with us! We'd love to hear your ideas and how we can support you. Email comms@raredisorders.org.nz

The team at Rare Disorders NZ wishes you and your whānau a joyful festive season.Our office will be closed from 19 Decem...
18/12/2025

The team at Rare Disorders NZ wishes you and your whānau a joyful festive season.

Our office will be closed from 19 December - 12 January 2026.

We look forward to reconnecting in the New Year.

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.

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/

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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.