Glowupshowup

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 Aotearoa community groups 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. More than half of those affected are children.

We are reaching out to community groups 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 often feel 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 decision makers in our health system to do right by rare.

How can your community group get involved?

See below for a list of ways you can get involved in Rare Disorders Month. Each option includes a link to a detailed guide.

By organising any of these activities, or taking part via social media, you’re giving hope to rare disorder whānau within your community and showing that they matter and they deserve adequate treatment.

Your support helps raise awareness and money for Rare Disorders NZ, helping to keep important advocacy work moving and develop a support mechanism for the 300,000 NZers living with a rare condition and the thousands more who are seeking diagnosis.

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!

Colour Run

Organise a colour run during Rare Disorders Month to help your community  glow up and show up for rare disorders. It’s also a fun outdoor activity before summer draws to a close. A great option for all ages.

View the Rare DIsorder Month colour run guide here.

Morning tea

Organise a morning tea for your community 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 DIY paint and sip event for your community 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.

Newsletter

To spread awareness to your community, you could include information about Rare Disorders Month in your next newsletter.

You could incorporate quotes or stories from your community members 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 members can like, comment and share our posts on Facebook, LinkedIn and Instagram throughout the month.

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

Feel free to use these social media tiles and captions or create your own. Note, this folder will be added to.

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 RDNZadmin@raredisorder.org.nz.

Additional resources

For more information on rare disorders, view our additional resources here.