Impact of Living with a rare disorder in Aotearoa New Zealand in 2025

The results from the 2025 New Zealand Voice of Rare Disorders Survey provide an opportunity to understand the real impact of living with, or caring for people with, rare disorders. The Impact of Living with a Rare Disorder in Aotearoa New Zealand in 2025 white paper has been informed by the 2025 Voice of Rare Disorders survey findings.

The survey captures the experiences of over 1,000 New Zealanders living with rare disorders and, with over 460 different diagnoses and good participation from Māori, remains the largest reported survey of consumer reported outcomes for rare disorders in this country.

The survey findings show systemic barriers persist in diagnosis, care pathways, access to medicines, social supports, and access to appropriate expertise for people living with a rare disorder. International comparisons reveal that New Zealand continues to lag behind OECD peers in access to modern rare disorder medicines and coordinated care.

KEY FINDINGS FROM THE 2025 SURVEY

• Three quarters of people living with a rare disorder have challenges with seeing, hearing and/or mobility.
• Over half of respondents waited more than a year for a diagnosis, and 23% waited more than 5 years. Misdiagnosis remains common, with over half misdiagnosed at least once.
• People living with a rare disorder needed to visit 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. 
• Hospital admission rates are almost twice as high as in the general population, with 39% of people with a rare disorder being admitted in the past year. For those admitted, an average of almost twelve days were spent as an inpatient. In addition, one in thirteen people with a rare disorder were admitted to ICU and spent an average of 4.2 days in ICU. 
• Almost 30% of people are self-funding their rare disorder medicines, the majority of whom are doing so out-of-pocket with a small proportion utilising private insurance (2%) or crowd funding (0.6%). 
• 53% felt the costs associated with the rare disorder for people and their whānau/family were hard to manage. 
• 39% of people living with a rare disorder (excluding children and students) were unemployed, with the majority citing long-term illness or disability. 
• Overall, 58% of people did not generally think that Disability Support Services took into account the unique needs of the rare disorders population. 
• Only 15% of people had some respite care in the last 12 months. While another 8% of people qualified for respite care, they were unable to use it as it was either unavailable or did not meet their requirements.
• One in three people often felt unhappy and depressed and felt they could not overcome their problems.

The finalisation of the Rare Disorders Strategy in 2024 marked a pivotal step forward, articulating a vision where “people living with rare disorders and their whānau are enabled to live their best lives” and where “no one is left behind.” To realise this vision, a coordinated, measurable, and equity-focused plan for implementation is essential.