Our mission
Amplify the collective voice to improve healthcare and wellbeing for people and their whānau living with a rare disorder
Latest news
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.
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.
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.
United Nations Event for SMA
Leading advocates urge Government to act for those living with the condition in New Zealand