Rare Disorders NZ February 2026 update
23 Feb 2026
| Message from the Chief Executive Kia ora koutou, greetings and Happy New Year With 2026 now in full swing what I’m looking forward to most is the special opportunities we have for raising awareness of rare disorders during Rare Disorders Month. I’m particularly looking forward to the parliamentary launch of our white paper, reporting on the results of our 2025 Voice of Rare Disorders Survey. The white paper includes lots of powerful material which will support our advocacy for the next couple of years. Following our November 2025 meeting with Health Minister Simeon Brown it’s been confirmed that the first Manatū Hauora | Ministry of Health led cross-agency forum to oversee delivery of Rare Disorders Strategy (RDS) is to be scheduled for May 2026. RDNZ will be present, and I’m sure there’ll be opportunities to refer to the white paper as we press for improvements in how the health system responds to the needs of people living with rare disorders. In addition to our advocacy, RDNZ’s contribution to implementing the RDS will include the capacity building work we’re doing in the rare disorders research space, with an important December milestone being formal recognition as a National Mirror Group member of the European Rare Diseases Research Alliance. For RDNZ to continue its mahi year by year we need to have enough income to cover our costs. Even though we try to be as lean as possible, and achieve as much as we can with the equivalent of just 4.5 full time staff, we’re still struggling financially. While there are things we can and will do to trim our expenses even further the real key to being financially sustainable is having enough income from a diverse range of sources. Every amount counts and I ask you to help us by doing what you can to support the fundraising activities that will be held during Rare Disorders Month. If you’d like to contribute you can either create your own fundraiser or make a donation here, with thanks in advance for your support. Ngā mihi Chris Chief Executive |
 | 28 February is International Rare Disease Day Only 5 days until International Rare Disease Day on the last day of February and when landmarks across the country will be glowing up for rare disorders! To find one near you, view a full list of the landmarks that have committed to lighting up on our website here. Take your family out, grab a selfie with your local landmark and send it to us (comms@raredisorders.org.nz) to share on socials! |
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| Rare Disorders Month 2026 28 February also marks the beginning of Rare Disorder Month – a month long campaign to raise awareness and funds for rare disorders. There’s lots to look forward to this March: White Paper launch at parliament. The results from our 2025 survey of the rare disorder community will be presented in The Impact of Living with a Rare Disorder in Aotearoa New Zealand 2025 white paper, to be launched at parliament on 11 March. Minister of Health Simeon Brown will be a guest speaker at the event. Rare Beer Challenge 2026. Aucklanders mark your calendar! 16 Tun in Wynyard Quarter has taken over the reins of hosting the annual Rare Beer Challenge, which will take place on 20 March. Come by to experience some truly unique brews created by some of New Zealand’s most passionate craft brewers, in support of rare disorders. Wellingtonians, you won’t miss out! A satellite event will be hosted at The Malthouse on Willis St with a selection of the rare beers. Rare regatta. We have a unique opportunity to raise vital funds for Rare Disorders NZ through an amazing charity regatta in Auckland on 25th March. See further details below. Glow Up & Show Up for Rare. This year, we’ve made it super easy for our community to set up a fundraising page for their Glow Up & Show Up for Rare initiative. Whether it’s a morning tea, workplace activity, school event or something uniquely you, every fundraiser helps make rare visible. Go to https://glowupforrare.raiselysite.com/signup to learn more. We are here to support your initiative in whatever way we can. - You can order free temporary tattoos by emailing RDNZadmin@raredisorders.org.nz - You can order Glow Up & Show Up merch through our online shop here - Download posters and social media tiles here Help us make rare visible this March and reach every corner of the motu by following us on Facebook, Instagram and LinkedIn and sharing our posts widely. Or post about your own journey with a rare disorder to help raise awareness. Remember to use the following hashtags #GlowUpShowUp #RareDisordersMonth #DoRightByRare Tag us on Facebook @RareDisordersNZ On Instagram @RareDisorders_NZ Check out our website for other helpful information and ideas. |
 | Sweet way to support a good cause Rare Disorders NZ was fortunate to get hold of three of the last precious bags of Jaffas produced 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. This is your chance to get your hands on some of that orange chocolatey goodness so get bidding today! https://www.trademe.co.nz/a/search?member_listing=9554351 |
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| Rare Regatta 2026 Our wonderful friends at 16 Tun have kindly offered to host a charity regatta for Rare Disorders NZ as a way to raise vital funds for the work we do. This is an amazing opportunity, but its success depends on whether we can fill the boats! This is a great way to spend the afternoon with family, friends, clients or colleagues, so please download this flyer and share widely with your networks. No sailing experience required, but 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! If you have any questions about this event or would like further information, please don't hesitate to get in touch! Contact gemma@raredisorders.org.nz 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: $3,000 + GST |
| Elections 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. Your voice and your concerns matter to them. Unsure about how to approach your MP? You can download a free template letter from our website here. Please let us know if you get a meeting, and we can help with advice and send you helpful resources to take with you to your meeting. Please get in touch with Alanna engagement@raredisorders.org.nz if you have any questions. |
| Opportunity to join our newly established Māori Advisory Board Rare Disorders NZ is establishing a Māori Advisory Group (MAG) to ensure that our mahi is grounded in Te Tiriti o Waitangi and guided by kaupapa Māori values. The MAG will provide strategic and cultural advice to RDNZ’s Board and leadership, helping to strengthen how we advocate for and support Māori affected by rare disorders. Learn more about this opportunity and how to express your interest here. |
 | Thank you We would like to acknowledge and thank the following sponsors for supporting key projects over the past two months: Frimley Foundation Four Winds Foundation One Percent Collective Trust House Foundation Trust Waikato |
| Make a difference for people living with a rare disorder We’re a small organisation with a big heart. We rely on grants and donations to carry out our work. Please consider donating to help us continue to improve information for rare disorder patients, their whānau and professionals and to keep advocating for systemic changes to benefit the entire rare disorder community. Your support is greatly appreciated. |
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