Raising the rare voice
We are the respected voice for rare disorders in New Zealand.
We advocate for access to world class and world leading health, disability, education and other services for the 300,000 New Zealanders living with a rare disorder.
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Rare Stories
Ellie's story
I am Ellie, I have IPH (Idiopathic Pumlonary Hemosiderosis). IPH is the unknown bleeding of the lungs. When I have a flare up, I cough up blood and find it difficult to breathe. I was diagnosed when I was 12. Growing up I had chest infections, pneumonia, coughing up blood and aneamia. After spending 3 weeks at Starship and having a lung biopsy my Doctors gave me my diagnosis. I take prednisone …
Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.
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