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