Rare Disorders Month: urgent action needed on Rare Disorders Strategy

Rare Disorders NZ (RDNZ) is calling on the Government to take urgent action this March to implement the stalled national Rare Disorders Strategy.

Today marks International Rare Disease Day and to kickstart Rare Disorders Month, 43 buildings across the motu will light up for rare tonight or throughout March.

Following over two decades of advocacy by RDNZ, last year New Zealand’s first Rare Disorders Strategy was released. RDNZ Chief Executive, Chris Higgins, says the Strategy implementation has now stalled and the health of those living with rare disorders has been put on hold.

“The rare community has shown incredible strength and resilience, and welcomed the national Rare Disorders Strategy. But people living with rare disorders cannot afford further delays. The Government needs to produce an implementation plan.

“We need to move into a new era where the Strategy has been implemented and our entire community is supported. Now is the time for action to ensure no one with a rare disorder is left behind.”

As well as the impact on rare lives, the implementation delay has a colossal economic impact. An estimated 300,000 people live with a rare disorder in New Zealand – half of those affected are children. The 2024 Voice of Rare Disorder White Paper survey showed that for 1 in 5 people with a rare disorder, it took over 10 years to get a diagnosis (White Paper, 2024). We know from international research that there are significant avoidable per patient medical costs and productivity losses due to delayed diagnosis.

RDNZ has launched a petition for a plan, which has over 1900 signatures. This Rare Disorders Month they’re calling on more people to sign.

This year also marks the 25th year of RDNZ. To honour a quarter century of progress, RDNZ will also host its 25th Anniversary Awards at Government House this afternoon, hosted by the Governor-General, Rt Hon Dame Cindy Kiro, patron of RDNZ.

James McGoram is the Rare Disorders NZ Board Chair and lives with a rare disorder called Fabry Disease. He implores the rare community to celebrate how far they’ve come.

“Let's keep up the momentum and continue to Glow Up and Show Up. It’s time to celebrate our progress while calling for action on the Strategy.”

Throughout March, RDNZ is calling Aotearoa to #GlowUpShowUp and shine a light on rare disorders. Opportunities to glow up and show up include community events, social media visibility, and fundraising. The highly anticipated Rare Beer Challenge is set for an expansion with events on March 7 in Wellington at Fortune Favours, Auckland at 16 Tun, and now Ashburton at Smoke. On March 30, the Auckland Sky Tower and Harbour Bridge will light up to close off Rare Disorders Month.

Donations to show support for the rare disorder community, can be made at glow-up-and-show-up.raiselysite.com/

Chris Higgins has his eyes to the future. “With years of hard-earned wisdom, we stand stronger than ever. This March we are ready to drive the implementation of the Rare Disorders Strategy forward with urgency and purpose.”