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

Ka pai to the runners in yesterday's Southern Cross Round the Bays in Christchurch! Awesome effort!🧡🏃Next it's Auckland'...
23/02/2026

Ka pai to the runners in yesterday's Southern Cross Round the Bays in Christchurch! Awesome effort!🧡

🏃Next it's Auckland's turn for Round the Bays on 8 March. Add another purpose to your run and sign up to fundraise for rare disorders!🏃🏼‍♀️

It's easy to to register on grassrootz. You'll get your own fundraising page to share with friends, family and colleagues so they can back you. Update your page on why you're running for rare and how you're getting ready for the big day.

Sometimes it's the commitment of running for something bigger than yourself that can give you that extra push when you need it the most.💪

To those who have already registered to run for rare - THANK YOU!

E koekoe te tūī, e ketekete te kākā, e kūkū te kererū.Rare Disorders NZ is forming a Māori Advisory Group (MAG) to uplif...
20/02/2026

E koekoe te tūī, e ketekete te kākā, e kūkū te kererū.

Rare Disorders NZ is forming a Māori Advisory Group (MAG) to uplift Māori voices, strengthen partnerships, and guide our mahi to achieve better outcomes for Māori with rare disorders.

We’re looking for Māori with lived experience, professional expertise, or a passion for whānau wellbeing to join this kaupapa.

EOIs close 12 March 2026. Find out more on our website, link below 👇

🌟One month today until the Rare Beer Challenge 2026! 🌟This is your chance Aucklanders to explore a full line-up of truly...
19/02/2026

🌟One month today until the Rare Beer Challenge 2026! 🌟

This is your chance Aucklanders to explore a full line-up of truly rare craft brews! The Rare Beer Challenge is being hosted in Auckland for the first time by our wonderful friends at in Wynyard Quarter.

Wellingtonians – The Malthouse will also be offering a selection of rare beers so you don’t miss out!

16 of NZ's most passionate craft breweries have signed up - Eddyline • Choice Bros • Three Sisters • Garage Project • Mean Doses • McLeods • Alibi • Roots • Mount • The Beer Engine • Urbanaut • Saint Leonards • Shining Peak • Fork and Brewer • Two Fold • Panhead

Thank you to the sponsors for once again getting behind this event:
Hills Hats • NZ Hops • Kegstar • Cryer Malt

Come along for a fun and truly unique experience and to support a great cause!

When: Launch party (open to public) on 20 March 2026, from 3pm

Beers will be available on tap from 20 - 27 March while stocks last. Come and vote for the People's Choice Award.

Where: Auckland: 16 Tun, 10/26 Jellicoe Street, Auckland Central
Wellington: The Malthouse, 76 Willis Street, Wellington Central

Election 2026: Meeting with your local MP is a powerful way you can get your voice heard at the highest levels.Book a me...
19/02/2026

Election 2026: Meeting with your local MP is a powerful way you can get your voice heard at the highest levels.

Book a meeting with your MP this Rare Disorders Month and talk to them about your journey with a rare disorder and what could be done to improve your quality of life.

It's election year – MPs need to understand what is important to their constituents.

Unsure about how to approach your MP? You can download a free template letter from our website (find link below in comments).

Let us know if you book a meeting, and we can send you helpful material to pass on to your MP. Contact engagement@raredisorders.org.nz

We're giving you the chance to get your hands on one of the last-ever bags of Jaffas!Rare Disorders NZ was fortunate to ...
18/02/2026

We're giving you the chance to get your hands on one of the last-ever bags of Jaffas!

Rare Disorders NZ was fortunate to get hold of three precious bags from the last production of Jaffas and we're auctioning them off on TradeMe to raise vital funds for our work supporting the 300,000 Kiwis who live with a rare disorder. How sweet is that?

Happy bidding!!

Only 10 days until International Rare Disease Day and the beginning of Rare Disorders Month! 🙌What will you do to for ...
17/02/2026

Only 10 days until International Rare Disease Day and the beginning of Rare Disorders Month! 🙌

What will you do to for Rare this March?

Need inspiration? Go to Rare Disorders NZ's website - link below in comments👇

16/02/2026

This year we’re making it super easy to for Rare!

Through our new fundraising platform, it is simple to sign up to create your own fundraising page.

How you choose to is entirely up to you!

Stuck for ideas? You could organise a ‘glow up’ bake sale, offer car washing in your neighbourhood, arrange a morning tea at work, or set yourself a challenge and get your family and friends to ‘show up’ and sponsor you. The sky is the limit!

By getting involved you are helping to raise vital funds so families affected by rare disorders don’t have to face their journey alone.

We can’t wait to see how you will for Rare!

12/02/2026

THANK YOU to the runners taking part in the Southern Cross Round the Bays in Wellington this Sunday who are fundraising for Rare Disorders NZ! Good luck and may be the wind always be at your back!🧡

For anyone wanting to sponsor these awesome athletes, you can donate to their pages via the link in comments below.

Inspired to join a community sporting event yourself to fundraise for rare? Check out the list below for an event near you!

The list of landmarks that will for rare this Rare Disease Day is at 42 and growing!Check out what will be glowing up ...
09/02/2026

The list of landmarks that will for rare this Rare Disease Day is at 42 and growing!

Check out what will be glowing up near you on our website and mark your calendar. We'd love you to get a selfie and share it with us!

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!

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.