Timeframe
2024–2025
Funding
Ember Korowai Takitini
COMPASS staff
Lisa Underwood
Natalia Boven
Collaborators
University of Otago
Nick Bowden
Community partner
Rare Disorders New Zealand
Description
Rare disorders are conditions that affect fewer than 1 in 2,000 people; more than 9,000 have been identified. Rare disorders are often severe, chronic, and life-threatening. These conditions affect each individual and their whānau differently; short-term manifestations and long-term outcomes vary greatly and are difficult to predict. On the whole, however, rare disorders present similar challenges because of their complexity and the support that is needed to manage them.
This research investigates rare disorders in Aotearoa New Zealand with an emphasis on factors that have long-term consequences for individuals, their families, and society. The work is being carried out in partnership with Rare Disorders New Zealand (RDNZ, https://raredisorders.org.nz), an advocacy organisation for more than 140 support groups.
We are utilising New Zealand’s linked data resources to examine:
- The characteristics of people with diagnosed rare disorders;
- Diagnostic and care pathways; and
- Access to treatment, especially rare disorder medications, and services.
The project will advance our understanding of the wider benefits of effective recognition and management of rare disorders. It focuses on target groups known to be represented at lower rates, or not at all, in rare disorder data, including Māori, Pacific, and Asian peoples, as well as people living in rural areas and those with low incomes. The findings will provide important evidence to support the implementation of the New Zealand Rare Disorders Strategy (https://raredisorders.org.nz/about-rare-disorders/rare-disorders-strategy) and enable support groups to engage with their communities.