Support Group Guide

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.

We are reaching out to you - our rare disorder support and advocacy groups - to help us drive awareness and raise funds to continue to advocate for our collective needs.

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

So why do we need to #GlowUpShowUp?

For 25 years, Rare Disorders NZ (RDNZ) and the rare community have been working hard to rally Aotearoa and the Government to do right by rare. After two decades of advocacy, last year the rare community successfully Glowed Up and Showed Up – rallying the motu and influencing the Government to deliver NZ’s first Rare Disorders Strategy.

Now, we are ready to move into a new era where the Strategy has been introduced, and our entire community is supported.

But since we welcomed the Strategy, progress on its implementation has slowed. The rare community can’t wait for action any longer.

This Rare Disorders Month is a chance to keep up the momentum and continue to Glow Up and Show Up. It’s time to celebrate our progress while calling for the Strategy to be implemented. Let’s light the way for rare.

How can your 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 the wider rare disorder community, and showing that we all matter and deserve adequate treatment.

Activity options - do one, some, or do them all!

Media release template

To spread awareness amongst the public and the media about your organisation’s involvement in Rare Disorders Month, use the media release template here.

If you need help building your media list to distribute your media release to, contact tilly@maiastudio.co OR libbie@maiastudio.co from the Rare Disorders media team.