News
The latest updates from RDNZ and the rare disorder community.
Outcome of February 2019 PTAC meeting
Kia ora Gill, I wanted to touch base to let you know that we have published the advice and recommendations from the February 2019 Pharmacology and Therapeutics Advisory Committee (PTAC) meeting.
Media release: NZORD supports rare medicine petitions to government
The National Organisation for Rare Disorders (NZORD) supports petitions for more effective, equitable outcomes for people with rare disorders, as part of a comprehensive, strategic approach for this vulnerable group of over 377,000 New Zealanders, half of whom are children.
New Zealand Health and Disability System Review
Have your say on how the system is working currently and identify the issues most critical to improving the effectiveness and equity of the system.
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.