Aug 12, 2023, 4:21 PM
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As we look ahead to the implementation of the Rare Disorder Strategy and how resources available across the health sector can be used in efforts to improve health system responsiveness for people and whānau with rare disorders as soon as possible, Rare Disorders NZ has identified a key opportunity for maximum leverage and progress for rare disorders through the establishment of a Rare Disorder Centre of Excellence in New Zealand.

Other countries have established Rare Disease Centres of Excellence that act as hubs of expertise to promote best practice and improve the availability and coordination of multi-specialty clinical care. Such centres are able to improve information availability for both medical professionals and patients, reduce the time to diagnosis and ensure patients have faster access to the appropriate care and treatment.

Rare Disorders NZ would like to see the establishment of a Rare Disorder Centre of Excellence in New Zealand as a solution to bridging many of the gaps in the delivery of health care to people living with a rare disorder. There is an opportunity to establish such a centre by looking to international best practice, developing regional partnerships, and applying a Te Tiriti focus to such work.

Rare Disorders NZ will be championing this aspiration in its advocacy efforts as we begin to look beyond the completion of the Rare Disorders Strategy.

Download our Rare Disorder Centre of Excellence fact sheet here.

Read about the Rare Care Centre in Perth here.

Read about the network of Rare Disease Centers of Excellence in the US here.

Read about our idea for a Centre of Expertise here.

Back to Rare Disorders Strategy progress