Share your story
Your experience matters
Rare is Everywhere. 300,000 people in New Zealand have a rare disorder and their lives are diverse, inspirational and humbling.
We recognise the power of personal stories and how they bring to light the reality of living with a rare disorder.
Sharing your personal story will help others going through a similar experience, and help educate the wider public about your condition.
How to share your story
If you would like to share your story, please fill in the Contact Us form on our website, state that you would like to share your story, and describe your journey - from getting a diagnosis to accessing the care and services you need, as well as the highs and lows along the way.
When we receive your story we will ask you for a photo to accompany it to feature on our website.
Thank you for sharing your story and helping to raise awareness of living with a rare disorder.
Meet some of the Kiwis living with a rare disorder and read their stories here.
