Rare Disorders NZ

10/03/2026

On 25 July 2024, the Rare Disorders Strategy was released. This was the first high level, documented intention to improve the health and wellbeing of people living with a rare disorder and their whānau in New Zealand.

Since then, it has been a long wait for a clear plan of action to implement the Strategy. We have made great progress in getting commitment on an implementation plan from the Government, with a cross-agency meeting scheduled for this May.

With an election year ahead of us, let’s use our voices to ensure this momentum isn’t lost. How can you help? Visit your local MP and tell them why Rare must be prioritised.

The power of advocacy should never be underestimated. Check out this timeline of our collective progress and some key and hard-won achievements over the years.

09/03/2026

How will you this March?

Start your fundraising page today and rally your community to for rare!

(Link in comments.)

08/03/2026

Our CE Chris Higgins was Glowing up & Showing Up for Rare in Wellington's Pride Parade on 7 March in support of people and families affected by rare disorders across Aotearoa New Zealand.

Minority groups share many of the same challenges, particularly of being seen, heard and understood. As a cis male joining in the pride parade Chris showed how we can for one another to promote inclusion and a shared sense of belonging.

You can donate to Chris' fundraising page for RDNZ to show your support! (Link in comments.)

06/03/2026

Meet Joanie.

Joanie lives with the rare disorder Desmoid Fibromatosis. She has an inoperable tumour, which causes her pain every day. The only available treatment in New Zealand is radiation, which has significantly diminished her lung capacity.

Joanie is not letting this get in the way of enjoying what she loves and achieving her dreams. Tomorrow she is competing in the Taupō Ironman .

Joanie, you're an inspiration. Good luck tomorrow! And thank you for helping to raise awareness of rare disorders.

04/03/2026

We're so grateful to Neck’s best thing for fundraising a whopping $1,330 for Rare Disorders NZ! 🤩

Their initiative is an awesome example of how local businesses can play a meaningful role in supporting our work to advance health equity.

If your business is interested in standing with the rare disorders community, now is the time to !

Photo - Aisha from Neck’s best thing receiving a thank you card from our South Island Coordinator Alanna's son, Lachlan. 🧡

03/03/2026

Our Rare Disorders NZ Charity Regatta is almost here, with only 11 boats available.

Gather your colleagues, clients, whānau or mates and join us for an unforgettable afternoon racing on Auckland Harbour, followed by Rare Beer drinks and prizegiving at 16 Tun.

No sailing experience needed. Each team gets a volunteer skipper.

📅 25 March | 12–5.30pm
📍 Auckland Harbour + 16 Tun
💰 $3,000 + GST per team of 6

Spots are filling fast. Email ewen@16tun.co.nz to secure yours.

Let’s Glow Up and Show Up on the water ⛵✨

01/03/2026

Aotearoa lighting up for Rare 🌈✨

Thank you to every landmark, council, business and whānau who helped make our community feel seen as a great start to Rare Disorders Month.

See our website for ideas of how to keep this visibility going through the month, or let us know if you have any community initiatives.

01/03/2026

Cheers David Hicks for the photo of Feldwick Gates & Queens Park Fountain in Invercargill and cheers to Invercargill City Council for glowing up for rare!

01/03/2026

Thank you RARITY and University of Otago for glowing up for rare!

Did you know, 300,000 New Zealanders live with one or more of the over 7,000 known rare disorders? It can feel lonely and isolating living with a disorder not many people understand. That is why tonight RARITY and University of Otago glowing up and showing up for Kiwis living with rare disorders, to show them that they are valued, and we care

01/03/2026

Thank you Redwoods Treewalk Rotorua!

28/02/2026

Michael Fowler Centre, Wellington - Glowing up for rare 🧡🌟