Send us your story

Help NZORD raise awareness of rare diseases in New Zealand and contribute to international awareness of the disease that affect you, your friend or your family.

If you would like to tell your story, please email us at

We’ve put together some questions that might help you put your story together:

  • Who is affected by a rare disease in your family?
  • What is the name of the rare disease?
  • What are the clinical features / symptoms?
  • How was the disease diagnosed?
  • How does it affect your family and the family member with the disease?
  • What have you been able to find out about the disease in New Zealand? Internationally?
  • Are you involved with a support group in New Zealand? Internationally? (We can link to the support group if they have a website)

If you’d like to include a photo of your family, please do so. We’ll publish your story on our website as soon as we can.

You can read other New Zealanders stories and stories from around the world.

Harvey Ellis