May 2, 2023, 12:22 PM

As we work with Manatū Hauora - the Ministry of Health on the development of a national rare disorder strategy, a central piece of this work is establishing an official definition of what is considered a rare disorder in New Zealand. 

Rare Disorders NZ believes it is imperative that New Zealand adopts the widely held and internationally established definitions; that a rare disorder is defined as affecting fewer than or equal to 1 in 2,000 persons, and that ultra-rare disorders are defined as affecting fewer than or equal to 1 in 50,000 persons.  

By using these definitions, not only will they help us in our quest to capture data and measure the cost of rare disorders on the health system and wider society, but they enable us to align internationally, which will be beneficial in international collaboration, inclusion in research and in bringing coherency and comparability to our practices and policies on the international stage. 

Rare Disorders NZ has submitted to Manatū Hauora our proposal for what the definitions should be, which you can read here.

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