News
The latest updates from RDNZ and the rare disorder community.
Therapeutic Products Regulatory Scheme
A Therapeutic Products Bill is being developed to replace the Medicine Act 1981 and establish a new regulatory scheme for therapeutic products.
Education Session video
Tracey's workshop was dedicated to addressing some of the challenges faced by those with rare disorders to help in creating a vision for navigating their own complex health journey.
NZ Herald article: Rare Disease Day
There needs to be greater recognition of rare disorders by those who have the power to help, says New Zealand Organisation for Rare Disorders chief executive Dr Collette Bromhead.
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.