Share your story
Rare is Everywhere and we recognise the power of personal stories. One in 16 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.