Rare Disorders Month is an advocacy and support period kicking off on Rare Disease Day - 28 February - and running through the month of March. We are calling on organisations and workplaces in Aotearoa to Glow up and Show up for Rare during this month. 

Glow up and Show up for Rare is all about shining a light on the urgent need for action to improve healthcare and wellbeing for people and their whānau living with a rare disorder and showing support for the rare disorder community.

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

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

We are reaching out to workplaces in Aotearoa to help us drive awareness and raise funds to continue to advocate for them. 

Nau mai, haere mai. Together, let’s glow up and show up for rare disorders.

So why do we need to #GlowUpShowUp?

As it stands in New Zealand, people living with a rare disorder are invisible in our healthcare system. Unlike most OECD countries, we don’t have a rare disorder strategy.

It’s time to #GlowUpShowUp for the hundreds of thousands of New Zealanders who are being left in the dark. And it’s time for the decision makers within our health system to do right by rare.

How can your workplace get involved?

See below for a list of ways you can get involved in Rare Disorders Month. These activities can function as team building exercises, boost morale, contribute to CSR objectives, and provide opportunities for positive owned and earned media content. Each option includes a link to a detailed guide.

If you would like to sponsor a larger scale event such as a colour run, we can provide you with signage, a media release template and social media support. Please email or

By organising any of these activities, or taking part via social media, you’re giving hope to the rare disorder community within your team, client/customer base, and stakeholders – showing that they matter and they deserve adequate treatment.

Your support helps raise awareness and money for Rare Disorders NZ, and the 300,000 NZers living with a rare condition. You’re showing support for the issue and increasing the urgency for the Government to get started on a dedicated rare disorder strategy.

ACTIVITY OPTIONS - do one or do them all, every bit of support helps!

Morning tea

Organise a morning tea for your workplace as a simple way to raise money and awareness for Rare Disorders Month.

View the Rare Disorders Month morning tea guide here.

Paint and Sip event

Organise a paint and sip event for your workplace as a simple and fun way to raise money and awareness for Rare Disorders Month.

View the Rare Disorders Month Paint and Sip event guide here.


To spread awareness to your community, you could include information about Rare Disorders Month in your next internal or external newsletter or blog post.

You could incorporate quotes or stories from people in your workplace or your wider community who live with a rare disorder. Write your own, or use our newsletter template as a guide.

Social media posts

We would love it if you and your team members can like, comment and share our posts on Facebook, LinkedIn and Twitter throughout the month.

To spread awareness to your network, you can post about Rare Disorders Month on your social media accounts too.

Feel free to use these social media tiles and captions or create your own. You can distribute these tiles and captions to your team members, who may want to post about their involvement in Rare Disorders Month on their own social media accounts.

We’d also love to send you some of our temporary tattoos and  see posts of you and those around you raising your hands to #GlowUpShowUp for rare. This is a great, easy way to get involved, if time and resources are tight. Order 100 tattoos by emailing