The Ministry of Health has published the Rare Disorders Strategy Implementation Plan 2026/27, setting out practical actions by health agencies to support people and whānau living with rare disorders.
The plan begins to put the Aotearoa New Zealand Rare Disorders Strategy 2024-2034 into practice, with actions starting on 24 July 2026 and continuing over the following 12 months.
It brings together work across the Ministry of Health, Health New Zealand, Pharmac, the Health Quality & Safety Commission, and Rare Disorders New Zealand, with actions focused on coordination, diagnosis, information, data, and system planning.
Key actions include establishing a clinical expert group within Health New Zealand, continuing a genome sequencing pilot for some people with rare disorders, improving health data, strengthening public and clinical information, progressing Pharmac's review of medicines considered in exceptional circumstances, and bringing agencies together regularly to track progress and agree future priorities.
Progress against the plan will be tracked by the agencies involved and reported annually by the Ministry of Health. Read the Rare Disorders Strategy Implementation Plan 2026/27 and the Aotearoa New Zealand Rare Disorders Strategy 2024-2034 on the Ministry of Health website.
