Rare Disorders NZ

01/04/2026

And that's a wrap! What a great Rare Disorders Month and what a great community.

Thank you to everyone who attended an event, contributed to an event, donated, initiated a fundraiser, spoke to media, hosted a event at their school or workplace or even just shared about rare disorders on social media.

Every contribution helps bring rare disorders out of the darkness and into the light.

01/04/2026

Olivia Worthington, guest speaker at the launch of the Impact of Living with a Rare Disorder in Aotearoa New Zealand white paper spoke to Stuff about her experience with a rare disorder and being one of the first people in New Zealand to receive CRISPR gene editing therapy through a clinical trial.

A woman with a rare genetic condition says Kiwis with uncommon disorders are waiting years for treatments already available overseas.

31/03/2026

Some changes from today to flexible funding through Disability Support Services, including the removal of purchasing rules.

The Ministry of Social Development advises that if you have questions about your own situation, your Host, NASC or Enabling Good Lives site is the best place to talk through what this means for you.

Link to more information in comments below

From 1 April 2026, people who use flexible funding through Disability Support Services (DSS) will have more flexibility in how they use their funding for disability-related supports.

The purchasing rules for flexible funding will be removed, while people’s allocated budgets stay the same as they are now. This means there will be no disruption to current supports.

These changes apply to people who use flexible funding. If you don’t receive flexible funding, nothing changes for you.

We know the last period of change has been hard for many disabled people, families, whānau and carers, and that it created uncertainty for many. Since then, work has been underway to improve the disability support system so it is fairer, more consistent, and easier to understand.

In February, DSS introduced a nationally consistent way of assessing needs and allocating funding. These April changes build on that work and reflect what the disability community told us through consultation.

From 1 April:
👉 Purchasing rules for flexible funding will be removed.
👉 People keep the same allocated budgets for flexible funding they have now.
👉 This gives more choice and control over disability-related supports, including respite options for carers
👉 You still need to keep your spending within your allocated budgets
👉 Flexible funding must still be used in line with people’s plans
👉 A small number of items will remain prohibited or require pre-approval
👉 There will be more support to help people to plan and manage their flexible funding.

These changes mean people can feel confident their supports will continue to reflect their assessed needs. You don’t need to do anything to get ready for these changes. Your Host, NASC or Enabling Good Lives site will continue to support you, and your current arrangements remain in place.

If you have questions about your own situation, your Host, NASC or Enabling Good Lives site is the best place to talk through what this means for you.

Thank you to the disability community for your feedback and patience as we begin to deliver these improvements.

You can find more information below 👇

https://www.disabilitysupport.govt.nz/news/more-choice-control-and-certainty-for-disabled-people-with-flexible-funding

31/03/2026

It’s the last day of Rare Disorders Month and we are only 21 followers short of reaching 5,000 on Facebook!

Through 5 simple clicks you can help us reach 5,000 by inviting your Facebook friends to follow us...

Here's how:
1. Go to Our Profile Page - facebook.com/RareDisordersNZ
2. Click on the Box with Three Dots ... (Screen Reader Users - Use the Arrow Keys or Tab Down to "See Options" - Hit Enter to Proceed)
3. Select Invite Friends
4. Select All
5. Send Invite

30/03/2026

What a night! $8,500 raised for rare disorders! Awesome achievement by all involved - thank you for your support 🧡

26/03/2026

The announcement last week that Health NZ is investing in whole genome sequencing capability was huge for the rare disorder community, as it will mean earlier and more accurate diagnoses for many.

But, until our insurance laws change, it is estimated up to 30% of people will decline genomic testing. This is because in New Zealand insurers are allowed to use genetic and genomic information to either determine cost of premiums or decline coverage altogether. Many comparable countries have banned genetic (and genomic) discrimination in insurance. Once again New Zealand lags behind.

This morning Prof Andrew Shelling from the University of Auckland spoke to Nine to Noon on behalf of the group, Against Genetic Discrimination Aotearoa (AGenDA).

This issue needs to be addressed urgently, and you can help! Talk to your local MP about why genetic (and genomic) discrimination in insurance should be banned.

It's election year, let's make sure every party understands why this is important.

Moves to locally conduct genomic testing has caused concern about what it means for insurance premiums and eligibility.

26/03/2026

The morning after our white paper launch at parliament, we enjoyed a lovely morning tea with the support groups leads who were in Wellington for the event.

It was a great opportunity to connect and reflect on the evening before and how far we have come as a collective.

25/03/2026

Only one week left of Rare Disorders Month! It's not too late to get involved!

There are so many ways you can help raise awareness and funds for rare disorders. Some have hosted morning tea fundraisers at their workplace. Some have set themselves a challenge.

Through our peer-to-peer fundraising platform it is easy to create your own fundraising page for RDNZ and invite friends, family and colleagues to donate.

Or you can donate directly to support our work. No matter how small, every donation makes a big difference to what we can achieve.

Thank you for your help and support!

22/03/2026

Rare Disorders NZ is pleased to be presenting today at the COMPASS Research Centre-hosted Community Session on Working together for Rare Disorders.

This is a wonderful opportunity to bring rare disorders researchers, clinicians and support group leads together in one room to discuss rare disorders research and how we can improve community engagement.

Senior Research Fellow of the COMPASS Research Centre (University of Auckland) Dr Lisa Underwood, organised today’s event.

You can hear about Lisa’s journey as a health researcher, advocate, member of the Rare Disorders NZ research network, and a dedicated voice in the Tuberous Sclerosis Complex community.

20/03/2026

And the Rare Beer Champion of 2026 is....

Shining Peak for their Vintage Cuvée – Imperial Barrel Aged Blend
A unique blend of six Vintage Stouts (2019–2024), each aged 8–10 months in freshly emptied whisky or bourbon barrels. The result is a rich, complex stout layered with dark malts, roast, subtle barrel character and warming depth.

Only a tiny amount exists, but Shining Peak is giving you the chance to get your hands on their winning brew. They are auctioning off three Magnum bottles to raise additional funds for Rare Disorders NZ. Each bottle has been hand-bottled, wax dipped and individually numbered. Link to auction in comments.

Congratulations to

2nd Place – Mean Doses
No Fate But What You Make – Low Carb Lager with Lactose, Earl Grey & Matcha

3rd Place – Alibi
7 Fires – Hot Honey Pilsner

People’s Choice – Saint Leonards
Koji – Sake Lager

The rare beers will be available on tap at 16 Tun and The Malthouse this week while stocks last, so make sure you pop by if you missed out last night!

Thank you to Ewen at 16 Tun for taken up the baton of organising and hosting the Rare Beer Challenge, thank you to all the craft breweries that got behind this event, thank you to The Malthouse for keeping the RBC alive in Wellington, thank you to the sponsors, the judges, to Chris Mac of Six60 for MCing and to everyone that came along in support of the rare disorder community. What an awesome day it was.

19/03/2026

The Rare Beer Challenge is TODAY! 🍻

Come along to experience the limited edition challenge beers today from 3pm or throughout the following week while stocks last at:
• 16Tun in Auckland
• The Malthouse in Wellington

Every purchase helps support the 300,000 people in Aotearoa living with a rare disorder.

It’s a simple and enjoyable way to stand with the rare community. Gather friends, try something new, and know you’re backing meaningful change.

Find out more at raredisorders.org.nz

18/03/2026

Rare Disorders NZ is thrilled by yesterday’s announcement that Health NZ, in partnership with Illumina is launching a whole genome sequencing pilot project.

Whole genome sequencing is the most advanced genetic test available, and having this capability in New Zealand will mean less reliance on overseas testing and faster turnaround times. For people living with rare disorders, this will be a gamechanger for early and accurate diagnosis.

“We have been calling for improvements to New Zealand’s capabilities for early and accurate diagnosis for a long time. This pilot project answers that call,” says RDNZ CE Chris Higgins.

In his announcement, the Minister of Health made special mention of the rare disorder community,

“Today’s announcement comes during Rare Disorders Month, which highlights the importance of timely diagnosis for the thousands of New Zealanders living with rare conditions. I want to acknowledge everyone living with, and supporting those affected by, a rare disorder.”

Once again, we have proven that as a community our collective voice is strong.

A genomics trial in Christchurch is being hailed as a “monumental” step forward for rare disorder and cancer patients and New Zealand’s capability in a growing medical field.