The latest updates from RDNZ and the rare disorder community.
Rare Disorders NZ (RDNZ) supports Patient Voice Aotearoa’s nationwide ‘Lie Down for Life’ to call for better access to modern medicines for genetic, undiagnosed and rare disorders.
RDNZ’s Chief Executive Lisa Foster attended the launch of the Mental Health and Wellbeing Commission in Wellington yesterday.
Last Wednesday RDNZ’s collective petition calling for urgent reform of the health system to include all people living with a rare disorder was handed over at Parliament.
Living with a rare health condition can be a genetic lottery as well as a complete game of chance in terms of the support and healthcare available in New Zealand.
RDNZ's CE Lisa Foster and Chair James McGoram had a fantastic opportunity to contribute to a Rare Disease International Policy Event on a UN Resolution for Rare Diseases last week.
The Pāua Man Porter, a robust 8.4% Baltic Porter brewed with the addition of fresh pāua, has won the first ever Rare Beer Challenge.
RDNZ CE Lisa Foster, Chair James McGoram and mum Sue Haldane met with the Health Minister Andrew Little today on behalf of the 300,000 New Zealanders living with a rare disorder.
Medical advice from Facebook, waiting years for a diagnosis, juggling dozens of specialists and even wishing it was cancer instead: these are the realities faced by the thousands of New Zealanders living with a rare disorder.
Hundreds of thousands of Kiwis have rare disorders but there is no official definition of what is rare, no register, no dedicated health policy and no co-ordinated support.
The New Zealand Government’s support of vulnerable people throughout the COVID-19 pandemic should be applauded - but more should be done to help the 6% of the population living with a rare disorder.