Fair for Rare campaign launch
28 February 2020
, New Zealand
Hosted by Rare Disorders NZ
“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.”
Helen Clark, United Nations
Rare Disorders NZ, and the support groups we represent, are calling for acknowledgement of the common challenges faced by people living with a rare disease, along with a commitment to address these challenges through the development of a New Zealand National Rare Disorder Framework. We want inclusion of patients and clinicians in decision-making processes, consideration of a wider definition of patient quality of life, and impact of rare disorders for carers.
For Rare Disease Day 2020, Rare Disorders NZ and the rare disorder community will come together for an event at Parliament to call for Fair for Rare. New Zealand lags far behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. Australia announced support of a national plan for rare disease patients in late 2018, ensuring that no one is left behind.