Our mission

Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder


Latest news

Sep 16, 2020, 6:56 PM
Media release: Rare Disorders NZ supports Human Rights Commission case against PHARMAC

Rare Disorders NZ (RDNZ) supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug.

Aug 25, 2020, 4:25 PM
Auckland 44yo fitted with pacemaker due to rare disease now fighting for others

A 44-year-old man had to be fitted with a pacemaker after he collapsed while making coffee for his wife.

Aug 24, 2020, 3:08 PM
Rare Disorders NZ AGM

The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 23 September from 10-10.30am at our offices in Newtown.

Aug 11, 2020, 4:30 PM
Rare diseases - is something so common really so rare?

As diagnostic tools in medicine become ever increasingly numerous, complicated and diverse, it should be no surprise that the breadth and number of diagnoses seems to be swelling.

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