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.
Rare Disorders NZ and Patient Voice Aotearoa will be presenting at an international virtual event with high level stakeholders to bring attention to spinal muscular atrophy (SMA) – a rare, inherited neuromuscular disease.
The Kōtare (sacred kingfisher) is a taonga of Aotearoa New Zealand. It is common, but is not often seen. That’s why they’re a perfect symbol for rare disorders.
As part of our ongoing ‘Fair For Rare’ campaign, we’re running a colouring competition for Children’s Day 2021 (November 20)
Rare Disorders NZ has made a submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey” on behalf of the rare disorder community as we do not feel those with a rare disorder have been included in the survey questions