Rare Disorders NZ

Rare Disorders NZ Donate today: raredisorders.org.nz We help people affected by rare disorders and their families find essential information and support.

RDNZ is the respected voice of rare disorders in New Zealand and is the only national organisation supporting all New Zealanders who live with a rare condition and the people who care for them. We also monitor rare disorder issues and policy in New Zealand, and build partnerships between patients and support groups, clinicians, researchers, policy-makers and industry. RDNZ greatly appreciates dona

tions through One Percent Collective: https://www.onepercentcollective.org/charity-partner/rare-disorders-new-zealand
or
Givealittle: https://givealittle.co.nz/org/rare-disorders-nz

Congratulations to Yingxin Zhang, the winner of our 2026 essay competition for health professional students. Yingxin pre...
27/05/2026

Congratulations to Yingxin Zhang, the winner of our 2026 essay competition for health professional students.

Yingxin presented an insightful patient-centric approach to incorporating advanced technologies such as whole genome sequencing and AI into healthcare services to improve the patient experience for people living with rare disorders.

“As healthcare professionals, our role is to steward these advances with care, ensuring genomic innovation is guided not by what technology permits, but by what patients need most,” - Yingxin Zhang

Yingxin is a 5th-year medical student at the University of Auckland. She is passionate about helping people during their most vulnerable moments, empowering them to live their lives fully.

Congratulations also to our runners up:

🌟Tarun Nambiar, a 4th year medical student based in Waikato
🌟Ellie Shimizu, a 4th year medical student at the University of Auckland

Every year during Rare Disorders Month we run this essay competition to provide health professional students an opportunity to consider and reflect on the unique challenges and needs of people living with rare disorders.

Link to winning entries in comments.

If you're looking to connect with a support group for your condition, contact us! There are over 150 support groups in o...
24/05/2026

If you're looking to connect with a support group for your condition, contact us! There are over 150 support groups in our rare disorder collective and we love to help connect where we can.

“At the most difficult time of a family’s life, it is so important they have the support they need, where they need it. ...
14/05/2026

“At the most difficult time of a family’s life, it is so important they have the support they need, where they need it. We are really pleased there is finally recognition of the value in investing in paediatric palliative care, and we see this as an important first step towards paediatric palliative care becoming available nationwide,” - Chris Higgins.

Great to hear today that Budget 2026 will include significant investment in paediatric palliative care.

Rare Disorders NZ made a submission last year on the Paediatric, Adolescent and Young Adult Model of Care proposed by Health NZ, fully supporting Rei Kōtuku’s submission and their vision for a Paediatric Palliative Care system. While the announcement today is not everything we had hoped for, it is a good, and important, first step in the right direction.

Advances in genetic technologies and precision medicines are transforming the diagnosis and treatment landscape for rare...
13/05/2026

Advances in genetic technologies and precision medicines are transforming the diagnosis and treatment landscape for rare disorders.

By implementing a comprehensive horizon scanning system New Zealand would proactively and more purposefully follow developments of new technologies and be better able to prepare for the demand that will follow.

New Zealand is already lagging far behind other OECD countries regarding medicine access, and our survey results show that many in the rare disorder community are rightly concerned that New Zealand is ill-equipped to meet the growing demand for novel therapies.

96% of those who had thought about it are either worried or very worried that promising future treatments and medicines (e.g. gene therapy/CRISPR) will not be funded by New Zealand’s public health system.

In our 2025 Voice of Rare Disorders Survey, 58% of respondents did not generally think that Disability Support Services ...
06/05/2026

In our 2025 Voice of Rare Disorders Survey, 58% of respondents did not generally think that Disability Support Services took into account the unique needs of the rare disorder population.

People living with rare and undiagnosed disorders who have disabilities often fall through the gaps in our support systems, because the access criteria are not designed with this population in mind.

As one of our seven priorities, Rare Disorders NZ advocates for the implementation of simple mechanisms to ensure appropriate access to disability and social supports to address the systemic inequities affecting many living with rare disorders, including for carers.

Our 2025 Voice of Rare Disorders Survey found that most respondents (84-93%) are accessing GPs and specialists far more ...
01/05/2026

Our 2025 Voice of Rare Disorders Survey found that most respondents (84-93%) are accessing GPs and specialists far more frequently than the general population, visiting their GP almost twice as often as the general population, with an annual average of almost 6 visits each compared to 3.1 visits for the general population.

As part of the implementation process of the Rare Disorders Strategy, Rare Disorders NZ will be pushing for the development of planned pathways for clinical care in the health system for rare disorders that are coordinated and integrated for cohesive healthcare.

Care pathways help streamline the patient’s journey, leading to better patient outcomes and reduced need for consultations with GPs, specialists and hospital stays.

It is not uncommon for people living with rare disorders to be undiagnosed for many years. Our most recent survey found ...
29/04/2026

It is not uncommon for people living with rare disorders to be undiagnosed for many years.

Our most recent survey found that almost one quarter waited over 5 years for a diagnosis. Living with uncertainty can be extremely unsettling. It is challenging managing daily life and planning ahead when you don't know what you are dealing with.

Rare Disorders NZ advocates strongly for improved pathways to early and accurate diagnosis. We are hopeful the new genomics pilot project in Christchurch will make a big difference in this space and we will be advocating for its expansion and permanent integration in the health system.

Meeting with your local MP is a powerful way you can get your voice heard at the highest levels. Tell them how they can ...
22/04/2026

Meeting with your local MP is a powerful way you can get your voice heard at the highest levels. Tell them how they can support better care for rare.

You can download a template letter from our website to make contacting them a breeze. (Link below in comments.)

There’s a lot happening in the rare disorders space at the moment, and the Rare Disorders NZ team is busy preparing for ...
19/04/2026

There’s a lot happening in the rare disorders space at the moment, and the Rare Disorders NZ team is busy preparing for a number of important meetings coming up, including:

➡️ Meeting with Pharmac to discuss the review of the Exceptional Circumstances Framework (how people may be able to access medicines when the standard Pharmaceutical Schedule funding process does not meet their needs)

➡️ Meeting with Te Whatu Ora to discuss next steps for a Rare Disorders Clinical Reference Group

➡️ Cross agency meeting on the implementation of the Rare Disorders Strategy

➡️ Quarterly meeting with MP cross-party group

Watch this space as we keep you up to date on outcomes from these meetings.

You can also sign up for our bimonthly newsletter by emailing RDNZadmin@raredisorders.org.nz.

Rare Disorders NZ’s Board is wishing to appoint two additional trustees - one with financial and accounting expertise, a...
15/04/2026

Rare Disorders NZ’s Board is wishing to appoint two additional trustees - one with financial and accounting expertise, and one tangata whenua who can offer kaupapa Māori expertise as the Board continues on its Tiriti partner journey.

You can learn more about this opportunity and how to apply via the link in comments below.

Address

PO Box 7081, Newtown
Wellington
6242

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm

Website

https://glowupforrare.raiselysite.com/donate

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