Rare Disorders NZ

04/06/2026

There are two disability support service consultation processes taking place that we want our rare disorder community to know about:

1️⃣ The Disability Support Services Bill was introduced to parliament on 18 May, had its first reading in parliament on 21 May and now the select committee is calling for submissions. The time frame is short, with submissions closing 12 June.

Rare Disorders NZ will be making a submission outlining a number of our concerns including the level of responsibility placed on families in the first instance to support disabled family members; the lack of consultation with the disabled community during the drafting of this Bill, and the potential for means testing of disability supports to be introduced at a later date.

CCS Disability Action has done a great rundown of the Bill and what it means for the disabled community, which you can read here: https://www.ccsdisabilityaction.org.nz/news/disability-support-services-bill

Through the Carers NZ post below you can find online workshops to help families understand the new Disability Support Services Bill, and how to make a submission or give input.

2️⃣ The other consultation process to know about is Disability Support Services will be running a community consultation from 8 June to 31 July for people who receive DSS funding, and people who support or advocate for those who do, to help shape the next improvements to services and supports.

Rare Disorders NZ will be making a submission, and we encourage you to get involved in a way that works for you, including online and in-person workshops, written or recorded submissions, and an online survey. Workshops will be running throughout June and July.

Find out more here https://www.disabilitysupport.govt.nz/news/community-consultation

Disability Support Services Bill May 24, 2026 by Rebekah Graham PVI has carefully considered the Disability Support Services Bill introduced to Parliament on 18 May 2026. We have identified aspects of the Bill we support, areas that require urgent clarification, and provisions that must be changed b...

03/06/2026

We're blown away by Pakūranga College raising over $2,000 for Rare Disorders NZ from their non-uniform day! Thank you for your generosity and aroha towards the rare disorder community 🧡🧡🧡

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.

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.

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.

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.

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.

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.

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.

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.)