BERL Rare Disorders Insights Report

BERL reportBusiness and Economic Research Limited (BERL) was tasked by Rare Disorders New Zealand to develop an insights report on rare disorders in New Zealand.

This report, Rare Disorders Insights Report: Pathways Towards Better Health Outcomes, is based on publicly available data and a high-level literature scan of recent New Zealand and international studies that discuss the prevalence of rare disorders, as well as burden factors that need to be considered in the development of health policies.

KEY FINDINGS

  • The lack of data regarding rare disorders in New Zealand is not only a challenge to estimating prevalence, but also for improving diagnosis, treatment and research.
  • The classification system for diseases that New Zealand uses does not include most rare disorders.
  • New Zealand may be performing worse than its peers in diagnosis speed and accuracy.
  • Pharmac’s own definition of rare disorders, at a prevalence of less than one person in 50,000, means that there is a rare disorder medicines funding gap.

Download the report here.