Our mission

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

 

Latest news

Nov 23, 2021, 8:36 AM
Open letter to the Government to establish an innovative acceleration fund for PHARMAC

ASK: Establish an innovative acceleration fund for PHARMAC to reduce pressure on the NZ health system.

Nov 18, 2021, 4:07 PM
Children with rare disorders share messages with the Prime Minister

To mark International Children’s Day, messages from children from the rare disorder community throughout New Zealand will be handed to the Prime Minister to tell her what it means to live with a rare disorder.

Nov 10, 2021, 1:12 PM
Call for people living with rare disorders to take part in major survey

A survey to collect much-needed data on what it means to live with a rare disorder in New Zealand is now live, and aiming to reach as many respondents as possible.

Oct 30, 2021, 10:00 AM
United Nations Event for SMA

Leading advocates urge Government to act for those living with the condition in New Zealand

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