The latest updates from RDNZ and the rare disorder community. 

Apr 23, 2019, 4:59 PM
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.

Apr 9, 2019, 6:12 PM
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.

Mar 27, 2019, 4:56 PM
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.

Mar 25, 2019, 6:03 PM
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.

Feb 28, 2019, 6:11 PM
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.

Feb 28, 2019, 6:10 PM
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.

Feb 28, 2019, 9:52 AM
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.

Feb 18, 2019, 6:14 PM
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.

Feb 13, 2019, 6:16 PM
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.

Jan 8, 2019, 6:19 PM
RDNZ advocacy and services

RDNZ was invited to present at the Tuberous Sclerosis Conference in Wellington in October.