Rare Disorders NZ April 2026 Update
24 Apr 2026
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Pānui April 2026  Message from the Chief Executive Kia ora koutou, My most important message for this month’s newsletter is to thank everybody who made Rare Disorders Month in March such a success. We glowed up and showed up for rare, engaged with peer-to-peer fundraising campaigns, and donated generously. Ewen from 16 Tun in Auckland and Sam from the Malthouse in Wellington were amazing in supporting our Rare Beer events in Auckland and Wellington. Round Table of Company members generously supported our awareness campaigning and public relations activities. The Minister of Health, Hon. Simeon Brown and Olivia Worthington were keynote speakers at our parliamentary event launching our whitepaper report on the results of our 2025 Rare Voices survey. In addition to thanking them for their special contributions I also want to thank everybody who supported us by coming along to the event – especially the large number of people who are living with a rare disorder. It was a pleasure and a highlight to share in the thankyou morning tea with you all the next day. All of these events and initiatives require a huge amount of work to bring into fruition and I want to finally thank everybody on the small but mighty RDNZ team who have made it all possible – Kim, Angela, Lewanna, Gemma, Alanna, Susan and Laura you’ve all been awesome. Ngā mihi Chris Chief Executive  Rare Disorders Month delivered again Once again Rare Disorders Month put the spotlight on rare disorders and demonstrated that there is so much aroha for the rare disorder community in Aotearoa New Zealand. We saw 51 landmarks light up for rare on Rare Disease Day, schools, kindergartens and workplaces host fundraisers, and over 20 stories in the media on rare disorders. Over $18,000 was raised for Rare Disorders NZ over the month, and we are so grateful to everyone who fundraised and donated to support the important work we do. Read more here. White paper on survey results launched On 11 March, Rare Disorders NZ launched theImpact of Living with a Rare Disorder in Aotearoa New Zealand in 2025 white paper at parliament. The white paper is based on the results of the Voice of Rare Disorders Survey conducted at the end of 2025, which captured the experiences of over 1,000 New Zealanders living with rare disorders and, with over 460 different diagnoses and good participation from Māori, remains the largest survey of consumer reported outcomes for rare disorders in this country. Thank you to Olivia Worthington, who lives with the disorder Hereditary Angioedema, for sharing her lifechanging experience of being one of the first CRISPR gene therapy recipients and to Minister of Health Hon Simeon Brown for speaking about his commitment to seeing the Rare Disorders Strategy implemented. Access the white paper here.  Making global connections for rare disorders research In March, our Chief Executive Chris Higgins represented New Zealand rare disorder research stakeholders in three international forums in Sofia, Bulgaria, linked to our recent membership of the European Rare Disease Research Alliance (ERDERA) as its newest National Mirror Group (NMG). The ERDERA National Alignment Board meeting was an important opportunity to gather national representatives and international partners to connect in person and reinforce alignment in national approaches to rare disorders research. Read more here.  Rare Beer Challenge welcomed by Aucklanders 16 Tun in Wynyard Quarter was buzzing with beer enthusiasts from around the country when on 20 March the bar hosted the Rare Beer Challenge’s launch party in Auckland for the first time. The event was an all-round success, not only helping to raise awareness of rare disorders but also raising over $8,500 for Rare Disorders NZ, from both 16 Tun and the satellite event in Wellington at The Malthouse. Find out who was crowned rare beer champion for 2026 here.  Research event highlights value of community engagement On 23 March University of Auckland’s COMPASS Research Centre hosted their Community Session 2026 on Working together for Rare Disorders to explore ways in which rare disorders researchers can better connect with those with lived experience. Rare disorders researchers, clinicians and rare disorder support group leads were brought together for a day of shared learnings and connection. Read more here.  New genomics pilot project announced in Christchurch In mid-March Minister of Health Hon Simeon Brown announced the launch of Health NZ’s new whole genome sequencing pilot project in partnership with Illumina. Prof Stephen Robertson, Chair of Rare Disorders NZ’s Clinical Advisory Panel represented Rare Disorders NZ at the launch. Whole genome sequencing is the most advanced genetic test available. Until now New Zealand has had to rely on genomic sequencing services on the other side of the world. Having access to this test in New Zealand will be game-changer for those affected by rare disorders. Our most recent survey found almost a quarter of respondents had waited over five years for a diagnosis, and half were misdiagnosed at least once. Learn more here. Submissions Submission on the draft Carers’ Strategy Action Plan. Read it here. In the media A selection of stories covered during Rare Disorders Month Waatea News: Election Year Spotlight Falls on Rare Disorders Strategy as Families Wait for Action RNZ Morning Report: Kiwis with rare diseases still waiting for action Stuff ‘You’re unlucky twice - first to have a rare disease and second to be born in New Zealand’ The Post: Christchurch genomics trial promises ‘phenomenal step forward, with faster tests and major health gains RNZ Nine to Noon What needs to be done to protect the use of genetic testing  Thank you We would like to acknowledge and thank the following sponsors for supporting key projects over the past two months: Chiesi Takeda Recordati Alexion Pub Charity Wellington UniVentures 16 Tun Hills Hats NZ Hops Kegstar Cryer Malt Steadfast NZ Foundation |
