Rare Disorders Month

On International Rare Disease Day – 28 February, we are kicking off the very first Rare Disorders awareness month - calling on Aotearoa to Glow up and Show up for Rare to show support for the 6% of the population living with a rare disorder..

During the month of March, we will be putting a spotlight on rare disorders and the issues important to the rare disorder community.

There are a number of ways you can get involved:

• Make your Friday drinks memorable by trying some truly unique brews at the Rare Beer Challenge, Wellington & Auckland
• Rally your local school, community groups, workplace, as well as family and friends to organise a fundraising event to show their support for rare. (Check out our helpful guides for inspiration on ways to #GlowUpShowUp)
• Attending a fun run in your area? Don some high-vis to show your support for rare and raise funds for Rare Disorders NZ
• Donate to Rare Disorders NZ through our Givealittle page
• Spread awareness and show support on social media!

#GlowUpShowUp       #DoRightByRare       #RareDisordersMonth

Together we can bring rare disorders out of the darkness, and into the light.

What are the issues facing people living with a rare disorder in New Zealand?

Unlike most OECD countries, New Zealand currently does not have a national strategy for rare disorders. 

The New Zealand health, social and education systems offer no pathways to support those affected by rare disorders. There are no set guidelines for health professionals to refer to when a condition is difficult to diagnose, or how to best support a patient with a rare condition. There is no rare disorder data registry to find the number of others affected by a condition, in fact not even an official definition of what is considered rare.

This means people living with a rare disorder are essentially invisible in the health, social and education systems and face unnecssary hurdles trying to access the support and care they need for a decent quality of life.

According to the 2021 Voice of Rare Disorders Survey, over half of people living with a rare disorder took longer than 1 year to get a diagnosis, and for one in five the time taken to get a diagnosis was over 10 years.

Meanwhile, 55% of respondents indicated their disorder impacted a lot on their health and everyday life, and 32% required more than 2 hours per day for illness-related daily tasks.

It’s not rare to have a rare disorder. In Aotearoa, more than 300,000 people live with one of 6,000+ rare disorders - that’s similar to the population of a big city like Wellington.

How will you Glow Up and Show Up for Rare?

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