Rare is Everywhere: Stories Project

NZORD recognises the power of personal stories. One in 12 people in New Zealand have a rare disorder and their lives are diverse, inspirational and humbling. Sharing your personal story will help others who share a similar experience and the audience reading your story.

Personal Details

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Your Story

Please share your personal story of living with a rare disease below, either by pasting your story in the box or uploading your story as a Word file.

Some things you may like to include are:

  • Your diagnosis story
  • How your rare disease impacts your daily life
  • What services/care/support would help to increase your quality of life
  • What medication can you access in New Zealand, or what are the impediments to accessing treatment

When sharing your story, please refrain from naming doctors or particular hospitals

Please upload a photo for inclusion with the story.

By submitting your story, you certify that this is an original work and you give NZORD consent to use the work, with or without attribution, including but not limited to posting the work on the NZORD website and sharing it through NZORD’s communications and with various media-related publications. Please note that stories may be edited. Should you wish your personal story and/or associated image to be removed at any time, please register your request via this email address: comms@nzord.org.nz.