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
Evie's story
Our precious daughter Evie is four years old, and was born with several medical issues. It wasn’t until February last year that we got a diagnosis for her, and whilst we knew she was unique, we didn’t know just quite HOW unique! Evie was diagnosed with a recessive autosomal genetic condition named Infantile Hypotonia Psychomotor Retardation Facies Type 1 (IHPRF Type 1). Whilst we haven’t been to…
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.
