The Ministry of Health has published New Zealand's first dedicated, health system-led strategy for people with rare disorders.
Globally, there are over 7,000 known rare disorders, with more being identified each year. Many are ultra-rare and may affect only one or a handful of New Zealanders. Yet, in total, some 300,000 may live with a rare disorder.
A rare disorder is a medical condition with a specific pattern of clinical signs, symptoms and findings that affects fewer than or equal to 1 in 2,000 people in Aotearoa New Zealand.
Rare disorders encompass a wide range of conditions, including genetic disorders, cancers, infectious disorders, poisonings, immune-related disorders, idiopathic disorders and various other rare undetermined conditions.
Dr Diana Sarfati, Director-General, Ministry of Health, says that the Aotearoa New Zealand Rare Disorders Strategy will enable the health system to be more responsive and supportive for both the rare disorders community and service providers.
"We know that New Zealander's and their whānau living with rare disorders often face significant barriers to getting timely, effective and equitable health care. Practitioners may find it difficult to diagnose rare disorders or may not know how to support their health and wellbeing."
"New Zealand needs a rare disorders strategy to improve how the health system responds and supports to those living with rare disorders, as well as the providers trying to meet patient needs."
"To develop the strategy, the Ministry worked in collaboration with Rare Disorders New Zealand and Te Aka Whai Ora - the Māori Health Authority to provide input and hear from members of the rare disorders community and their whānau as well as researchers, clinicians, and other sector experts. "
The Aotearoa New Zealand Rare Disorders Strategy will set the direction and long-term priorities that will guide health entities over the next 10 years.
The Ministry of Health, Health New Zealand, Pharmac, and the Health Quality and Safety Commission will all play a key part in implementing and monitoring the strategy.
The Ministry will support entities to make plans for actioning the Aotearoa New Zealand Rare Disorders Strategy priorities.
