UN recognition for all people living with a rare disease
24 September 2019
Rare Disorders NZ (RDNZ) congratulates Rare Diseases International for ensuring that the UN Member States adopted a political declaration on universal health coverage (UHC) that includes mention of rare diseases.
“This is the first time people with rare diseases are included in the UHC declaration which is a huge milestone for global advocacy groups,” says RDNZ Chief Executive Lisa Foster. “There are more than 300 million people living with rare diseases worldwide and UN recognition will ensure this population is not left behind.”
Earlier this month RDNZ wrote a letter to Craig Hawke, the NZ Ambassador to the UN, to request that New Zealand supported a UN Political Declaration on Universal Health Coverage that addresses the needs of persons living with a rare disease.
At a political level, the inclusion of rare diseases alongside other diseases means that people living with rare health conditions are no longer invisible to international health policy makers.
“Now that this UN declaration including rare diseases has been achieved, we look forward to working with the Ministry of Health to ensure our international obligations are met,” says Lisa.
“As the focus of this government is wellbeing, especially for children, we feel confident of positive change ahead.”
There are more than 7,000 known rare disorders which collectively affect 400,000 New Zealanders – half of whom are children. As the umbrella organisation for all rare disorders in New Zealand, RDNZ works with more than 140 support groups, some of which are too small and under-resourced to take a public stance, to promote better health care and wellbeing for all people living with a rare disease.
Rare Disorders NZ (formerly NZORD) is a connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect 8-10% of New Zealanders.
There is no acknowledged definition of rare disease in NZ, however RDNZ follows the European Union policy which defines a disorder as rare when it affects fewer than 1 in 2000. More than 7,000 rare disorders collectively affect around 400,000 New Zealanders. Of this number, 50% are children.