Advocates for people with rare disorders say they feel overlooked and let-down the government which promised funding, but has failed to deliver. Around 300 thousand or six percent of New Zealanders live with a rare disorder. A new survey finds for one in five, it took over ten years to gain a diagnosis, with the majority reporting being misdiagnosed at least once. It finds a lack of accessible, effective modern medicines available for the majority of people and most respondents believe that professionals are poorly prepared to support them with their rare disorder.
Rare Disorders New Zealand is the only national organisation supporting all New Zealanders with rare disorders, however its funding was been cut in half by the Government. Kathryn speaks with Lisa Foster of Rare Disorders New Zealand and Dr Rosemary Marks, from the Paediatric Society.
Photo: Pixabay/BeFunky
