Rare Disorders NZ

21/09/2025

Our Chair James McGoram has sadly had to make the difficult decision along with his family to move to Australia to access the life-saving medicine he requires to manage his rare disorder, Fabry disease.

James will be stepping down from his role as RDNZ Board Chair at the AGM this Thursday, and Ariane Tuapola has agreed, with the Trustees’ endorsement, to be the new Chair from that date.

“It has been a very tough decision for my family to uproot ourselves from our community, and to leave our home, our friends and our family behind, but as time goes by my situation is getting more precarious.

“I’ve fought hard for the rare community, and it frustrates me that my illness, and the lack of treatment, mean that I am compelled to leave to save my life.”

James has been on the RDNZ Board since 2020 and stepped into the role of Chair in 2021. RDNZ has become a more prominent and visible organisation during James' time as Chair. A highlight from this time was seeing New Zealand's first Rare Disorders Strategy developed by Manatū Hauora after many years of patient advocacy. In addition to the time James has dedicated as Chair, he also developed RDNZ’s new website pro bono and donates his time with ongoing website support.

Ariane joined the RDNZ Board in 2024. She has a biomedical science background with significant expertise in science, research, health and innovation. She currently works as the Lead, Non-communicable Diseases for the Polynesian Health Corridors Programme, based at Manatū Hauora. Ariane is very familiar with many of the challenges faced by the rare disorders community. She was diagnosed with an autoimmune condition 6+ years after first presenting to her GP, and also has someone in her whānau living with the rare disorder, Biliary Atresia.

TVNZ One News covered James' story on Friday.

Outgoing Rare Disorders NZ chairman James McGoram says while he loves Aotearoa, "living here is quite literally killing me".

16/09/2025

If you think health, social and disability services could do better for people living with rare disorders tell us why in our 2025 Voice of Rare Disorders Survey. Your experience is important to help inform what needs to change.

Access the survey via the link in comments.

15/09/2025

"Every kilometre I walk or run is a message that we're not alone - and we won't stop moving forward, one step at a time."

Join Ursula in the 2025 Barfoot & Thompson Auckland Marathon and support Rare Disorders New Zealand.

11/09/2025

Message from CE of RDNZ Chris Higgins - please take the Voice of Rare Disorders Survey today.

09/09/2025

What has been your experience of getting the support and services you need to manage your rare condition?

Your experience is important to informing the picture we are building of how Kiwis living with rare disorders are faring.

Take the Voice of Rare Disorders Survey to share your journey. Link in comments

08/09/2025

If you, or someone you care for, lives with a rare health condition in New Zealand, this survey is for YOU.

➡️How long did it take to get a diagnosis?
➡️How much of an impact does the condition have on your daily life?
➡️Are you able to access the services you need?

These are just some of the things we want to know, so that we can identify inequities in health and social services for the rare disorder community.

Help shape a better future for people living with rare disorders in New Zealand and take the survey TODAY. Link in comments.

Thank you for sharing your journey🧡

04/09/2025

Rare Disorders NZ further strengthened our call for the Rare Disorders Strategy to be incorporated as a health strategy under the Health Futures (Pae Ora) legislation through our oral submission this week to the Health Select Committee on the Healthy Futures (Pae Ora) Amendment Bill.

You can view the submission below and read our written submission via the link in comments.

03/09/2025

We love this animation from the Rare Care Centre in Perth, Western Australia in collaboration with Syneos Health Communications.

Designed to foster more inclusive, informed and empathetic school environments, the animation introduces educators to the unique challenges faced by students with rare disorders.

The Rare Care Centre in Perth, Western Australia in collaboration with Syneos Health Communicaton, has launched a new rare disease animation and supplementar...

02/09/2025

Did you know - through payroll giving you can donate regularly to Rare Disorders NZ and receive instant tax credits of 33c for every dollar you donate (for all donations over $5)?

This means that if you choose to donate $15 through payroll giving, only $10 will be deducted from your take-home pay.

An easy and effortless way to contribute to making New Zealand a better place for people living with rare disorders.🧡

A small donation each week makes a big difference over time.🙏

Learn more via the link in comments.

28/08/2025

We're incredibly sad for our wonderful friends at Fortune Favours that they will be permanently closing their Leeds St brew bar in Wellington due to the cost of living crisis.

As many of you will know, Fortune Favours has led a wonderful and truly unique fundraiser for us for the last five years - the Rare Beer Challenge. This was such a highlight for us each year and Fortune Favours put in all the work to make it a success year on year - from rallying the craft beer community, to all the logistics and marketing collateral, hosting the event and raising the funds.

We're so grateful for their unwavering support for the rare disorder community and the over $30,000 they've raised for us over the years.

If you are in Wellington this weekend, stop by on Leeds St and raise a glass for the Fortune Favours crew.

27/08/2025

New Zealand’s strategy to improve the lives and uphold the well-being of disabled people and tāngata whaikaha Māori is being refreshed.

The disability community and the public are invited to have their say on the draft New Zealand Disability Strategy.

RDNZ will be making a submission. If you would like your views incorporated in our submission, email enquiries@raredisorders.org.nz.

You can view the draft New Zealand Disability Strategy 2026-2030 and also make your own submission via the link below in comments.