Fair for Rare NZ
On 28 February 2020 - Rare Disease Day, RDNZ and our collective of support groups launched the Fair for Rare NZ campaign, calling for the development of a National Rare Disorder Framework.
Rare disorders in New Zealand
People living with a rare disorder are estimated to make up 6% of New Zealand’s population, yet this large community experiences substantial unmet need and inequitable access to healthcare.
With over 6,000 known rare disorders, individually these disorders occur in very small numbers in the population, but collectively, rare disorders are estimated to affect 300,000 people in New Zealand.
Regardless of their specific disorder, those affected share the same challenges and systemic barriers in New Zealand - lack of timely diagnosis, poor treatment access, lack of coordinated care, isolation, significant carer impact and for many, being lost in the system.
Achieving health equity for rare disorders in New Zealand
The need for a National Rare Disorder Strategy
New Zealand has never had a National Rare Disorder Strategy to guide the health system in how to manage rare disorder cases and offer pathways to support those affected by rare disorders.
In 2022, the Government announced that it was committed to developing a strategy for rare disorders. The development of the strategy is currently still in progress - you can read more about it here.
The importance of data
Another significant barrier to addressing the unmet needs of people living with a rare disorder is the lack of data collected on rare disorder patients, due to the classification system for diseases that New Zealand uses not including most rare disorders. You can read more about this here.
Priorities for improving the health and wellbeing for people living with a rare disorder
The rare disorder community has collectively identified seven strategic priorities to improve health and wellbeing for people living with a rare disorder.
1. DIAGNOSIS
Early and accurate diagnosis of rare diseases
2. PLANNED PATHWAYS FOR CLINICAL CARE
Coordinated and integrated pathways for cohesive healthcare
3. ACCESS TO DISABILITY AND SOCIAL SUPPORTS
Implement simple mechanisms to ensure appropriate access to disability and social supports
4. RARE DISORDER MEDICINES
Equitable access to modern rare disorder medicines through a specific assessment pathway
5. RESEARCH
Coordinated and funded programme of research for rare disorders
6. NATIONAL RARE DISEASE REGISTRY
Capture relevant data on rare disorders in New Zealand
7. WORKFORCE DEVELOPMENT
Planned training on rare disorders for health professionals and support staff
In this section
Voice of Rare Disorders White Paper 2022
The Voice of Rare Disorders survey was conducted in November 2021 by Rare Disorders NZ to fill a significant data-gap in the New Zealand health system, due to the lack of official data collected on rare disorders.
Rare Disorders Strategy progress
Rare Disorders NZ has long been calling for a national rare disorders strategy to ensure the health system recognises, and equitably meets the needs of, the 300,000 New Zealanders living with a rare disorder.
BERL Rare Disorders Insights Report
Rare Disorders Insights Report: Pathways Towards Better Health Outcomes
Stakeholder Roundtable - Oct 2022
In late 2022, with pro-bono support from medical communications specialists Costello Medical, Rare Disorders NZ hosted a multidisciplinary virtual roundtable event involving key stakeholders from both New Zealand and overseas.
Where do the political parties stand in 2023?
The rare disorder community and their whānau are voters too. Given the significant impact these conditions have on every aspect of their daily lives, they are eager to know where each party stands in wanting to address the challenges faced by the rare disorder community as they head to the polling booths at this year’s election.