The latest updates from RDNZ and the rare disorder community.
Rare Disorders NZ has made a submission to the Pae Ora Legislative Committee on the Pae Ora (Healthy Futures) Bill.
ASK: Establish an innovative acceleration fund for PHARMAC to reduce pressure on the NZ health system.
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.
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.
Leading advocates urge Government to act for those living with the condition in New Zealand
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)
In this issue. International Children's Day Colouring Competition, Health Select Committee Hearing, Wellington Rare Disorder Catchup, The Medicine Gap, COVID Vaccine Update
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
The Ministry of Health does not recommend the development of a national framework for rare disorders at this stage.