News
The latest updates from RDNZ and the rare disorder community.
Media release: Rare Disease Day Awards
The inaugural Rare Disease Day Awards have been established to honour and recognise ordinary people who have made a positive impact through patient support, advocacy, research and clinical practice.
Media release: Rare Disease Day 2019 - Rare is Everywhere
Four-year-old Evie from Tauranga is one of the most unique children in the country – and the world.
Introducing our new Chief Executive: Gill Greer
Dr Greer is a former NZORD board member with a wealth of experience in not-for-profit organisations.
PHARMAC’s Rare Disorder Subcommittee
The Subcommittee met on 5 and 6 November 2018 and has recommended that four medicines be funded, and five be declined for funding.
RDNZ advocacy and services
RDNZ was invited to present at the Tuberous Sclerosis Conference in Wellington in October.
Consumer voices review 2018
PHARMAC has released a report and action plan from their review of the role of the consumer voice in their work.
Rare disorder researchers’ meeting
New Zealand’s first meeting of rare disorder researchers took place at Otago University last month.
Support for rare
The Australian Government has announced support for a National Rare Disease Framework and Action Plan.
Applications for medicines for rare disorders
PHARMAC has received 13 supplier funding applications for medicines for rare disorders.
PHARMAC proposal open for feedback
PHARMAC is proposing to change how three hospital medicines are managed within the Pharmaceutical Schedule.