Share your story
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.
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.