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.
Rare News
Rare Stories
Susan's story
In 2012, my brother Andrew became very unwell. Slowly over time he had several vague ailments that individually did not set off any alarm bells. Unfortunately, he passed away and we were left without any answers. His postmortem showed a myriad of anomalies that could not be clearly explained. Within six months we had news from the UK that one of our cousins had just been diagnosed with Hereditary…
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.
Browse all storiesConnect with us
Keep up to date with our work by signing up to our regular newsletter.
We contact our supporters roughly once per month, and you can unsubscribe at any time.