The Kiwi patients that New Zealand's health system won't help
Pompe disease causes muscle weakness and affects breathing. Unlike 60 other countries, New Zealand does not fund the medicine that halts the progress of Pompe.
NZORD's Collette Bromhead says anyone unlucky enough to be diagnosed with a rare disorder here shouldn't hold their breath.
"My advice? Go to Bulgaria. Go to Serbia. Go to Columbia even. Go anywhere but New Zealand because medicines for rare disorders are funded better in those countries than they are in New Zealand."