Media release: UN recognition for all people living with a rare disease

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.”

None

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.

None

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.