Meeting with the Minister of Health
RDNZ CE Lisa Foster, Chair James McGoram and 22Q mum Sue Haldane met with the Health Minister Andrew Little today on behalf of the 300,000 New Zealanders living with a rare disorder.
“Our meeting with Minister Little provided a fantastic opportunity to express the need for equity for people impacted by rare conditions,” says Lisa.
To explain the need for a National Rare Disorder Framework, RDNZ presented evidence of the barriers and with support of Sue as a lived example, we covered all areas of diagnosis, education, health pathways, coordinated care, medicine access, data and registries, clinical trials and research.
“The Minister was attentive and interested, he stated he did not understand why the funding for RDNZ was reduced by half - it seems no one does!” says Lisa.
The fact that New Zealand is falling behind internationally was discussed along with the opportunity for solutions that other countries are already implementing – such as the Awareness and Education Pillar in Australia and the UK’s GP Education Programme.
“Minister Little stated he will get back to RDNZ regarding next steps so we aim to keep in close contact with his office,” says Lisa.