Rare is Everywhere and we recognise the power of personal stories. Thousands of 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.

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.