On 25 July 2024, Aotearoa, New Zealand, witnessed a landmark event when it released its first Rare Disorders Strategy. You can get your copy of the strategy here.

This pivotal strategy, developed by Manatū Hauora | Ministry of Health, represents the inaugural comprehensive approach aimed at enhancing the health and well-being of individuals living with rare disorders and their whānau (family). This initiative is a significant stride towards recognizing and addressing the unique challenges faced by this community.

The Rare Disorders Strategy is a groundbreaking document for several reasons. Foremost, it signifies the first formal recognition and definition of what constitutes a rare disorder in Aotearoa, New Zealand. This definition is crucial for ensuring that individuals with rare disorders receive the appropriate support and resources. The establishment of this strategy demonstrates a committed intention to bring about tangible improvements in the lives of those affected by rare disorders.

The development of the Rare Disorders Strategy was a collaborative effort involving the rare disorder community. Rare Disorders NZ, alongside other advocates, including ITP Australia and New Zealand, played a critical role in this process, participating as part of the Reference Group. Their involvement was instrumental in providing valuable input and feedback on drafts of the strategy. By ensuring that the lived experiences of individuals with rare disorders were prominently featured, the community helped shape a strategy that is both empathetic and effective.

Moving forward, the rare disorder community, including Rare Disorders NZ, will continue to play a vital role in the implementation of the strategy. They will work closely with the agencies responsible for executing the strategy: Manatū Hauora | Ministry of Health, Te Whatu Ora | Health New Zealand, Te Pātaka Whaioranga | Pharmac, and Te Tāhū Hauora | the Health Quality & Safety Commission. This collaboration will be key to ensuring that the strategy is not only implemented but also adequately actioned to bring about meaningful changes in service delivery for people living with rare disorders and their whānau.

The release of the Rare Disorders Strategy is a monumental moment for the rare disorder community, which has been advocating for such a strategy for over two decades. This long-awaited strategy brings hope and a renewed sense of purpose to those who have tirelessly campaigned for recognition and support. It signifies that an equitable future for individuals living with rare disorders is now within reach.

The strategy is expected to pave the way for a more inclusive and supportive healthcare system. It is designed to address the various challenges that individuals with rare disorders face, including access to specialised care, support services, and necessary medications. By creating a clear and structured approach, the strategy aims to reduce the disparities and barriers that have long been a part of the lives of those with rare disorders.

In addition to the main document, several supporting documents have been released to provide context and evidence for the strategy. These include the Aotearoa New Zealand Rare Disorders Strategy Context and Evidence, and the Aotearoa New Zealand Rare Disorders Strategy Rare Voices and Aspirations. These documents offer a deeper insight into the research, experiences, and aspirations that have shaped the strategy, and are essential reads for anyone involved in the rare disorders community.

The Rare Disorders Strategy is a significant achievement for Aotearoa, New Zealand. It represents a hopeful and proactive approach to addressing the needs of those with rare disorders. With the collaborative efforts of various health agencies and the unwavering advocacy of the rare disorder community, this strategy promises to bring about substantial improvements in the lives of many. The rare disorder community can now look forward to a future where their needs are better understood and met, paving the way for a more equitable and supportive healthcare system.

Download Aotearoa New Zealand Rare Disorders Strategy here.

Download Aotearoa New Zealand Rare Disorders Strategy Context and Evidence (supporting document) here.

Download Aotearoa New Zealand Rare Disorders Strategy Rare Voices and Aspirations (supporting document) here.

Source: Rare Disorders New Zealand