3 days Ago By Chris Higgins
THREE KEY FACTS 300,000 New Zealanders are living with a rare disorder. In July last year, the country’s Rare Disorders Strategy was released by the Ministry of Health . It acknowledges that people with rare disorders and their families often face barriers in getting timely, effective and equitable healthcare .
For 25 years, Rare Disorders NZ has fought for 300,000 Kiwis living with rare conditions , a group long overlooked by our healthcare system. As we reflect on our anniversary and the progress made during Rare Disorders Month in March, it’s clear that while we’ve made strides, the work is far from done. Rare disorders continue to be neglected – and those affected face barriers to the care and resources they need.
This year, our focus has been on pressing the Government to take urgent action on implementing the national Rare Disorders Strategy, a plan that has been agreed upon but delayed for far too long. Until it is fully implemented, people living with rare disorders will continue to struggle in a healthcare system that isn’t designed to meet their unique needs..
