For support groups

Rare Disorders Month is a chance for rare disorder patients, as well as their support group communities and whānau, to rally together and use our collective voice. As individuals, we often feel unseen, but as a rare disorder community, we are an army of 300,000 - plus whānau and supporters.

Together we can raise meaningful awareness and spark monumental change. Together we can bring rare disorders out of the darkness, and into the light.

We have put together a Support group guide for Rare Disorders Month, outlining ways support groups can get involved and help raise awareness throughout Aotearoa. 

Watch the helpful loom below to take you through the guide:

How can your organisation get involved?

Tattoos

We’d love to send you some of our temporary tattoos and see social media 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@raredisorders.org.nz.

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 bee@maiastudio.co from the Rare Disorders media team.

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.

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.

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. 

Additional resources

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