Rare Disorders New Zealand is calling on Kiwis to Glow Up and Show Up for the rare disorder community throughout March in recognition of a population who has been left in the dark for too long.

The month of March, which is New Zealand's first Rare Disorders Month, is an advocacy and support period for the more than 300,000 New Zealanders who live with one of 6000-plus rare disorders.

RDNZ chief executive Michelle Arrowsmith says Glow Up and Show Up for Rare is all about shining a light on the urgent need for action to improve the health and wellbeing for people living with a rare disorder.

'The Government promised action for this group of New Zealanders – now they need to do right by them...throughout Rare Disorders Month, we'll be putting a spotlight on rare disorders, maintaining visibility, initiating important conversations, and highlighting how we can all show up.

The month kicked off with the launch at Government House of a Parent Guide for the thousands of whānau of children diagnosed with a rare disorder.

During March, New Zealanders can Glow up and Show up for Rare via community, workplace, and school events. Other major events include a fundraising Paintvine Event and a Rare Beer challenge with Fortune Favours in Wellington.

Michelle says unlike most OECD countries, New Zealand doesn't have a national strategy for rare disorders.

'For policy-makers, Rare Disorders Month is all about doing right by rare and following through on a commitment to create constitutional change by developing a rare disorders strategy.”

According to the 2021 Voice of Rare Disorders Survey, more than half of people living with a rare disorder took longer than one year to get a diagnosis; and for one in five the time taken to get a diagnosis was over 10 years.

Meanwhile, 55 per cent of respondents indicated their disorder impacted a lot on their health and everyday life, and 32 per cent required more than two hours per day for illness-related daily tasks.

'Living with a rare disorder isn't rare – the size of the community is similar to that of a big city like Wellington. If you don't have a rare disorder, then you likely know someone who does. And they need you to Glow Up And Show Up this Rare Disorders Month,” says RDNZ chair James McGorman.

Comprehensive guides detailing how to #GlowUpShowUp are available at:raredisorders.org.nz