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Rare is Everywhere. Thousands of 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.
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Some things you may like to include are:
When sharing your story, please refrain from naming doctors or particular hospitals.