The latest updates from RDNZ and the rare disorder community. 

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

Lisa spoke about the advocacy work RDNZ (formerly NZORD) does on behalf of all rare disease groups in New Zealand, as well as explained the services we offer to patients and health clinicians.

Dec 19, 2018, 9:43 AM
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.

Dec 10, 2018, 9:49 AM
Rare disorder researchers’ meeting

New Zealand’s first meeting of rare disorder researchers took place at Otago University last month.

Nov 28, 2018, 9:51 AM
Support for rare

The Australian Government has announced support for a National Rare Disease Framework and Action Plan.

Oct 1, 2018, 11:25 AM
Applications for medicines for rare disorders

PHARMAC has received 13 supplier funding applications for medicines for rare disorders.

Sep 11, 2018, 11:27 AM
PHARMAC proposal open for feedback

PHARMAC is proposing to change how three hospital medicines are managed within the Pharmaceutical Schedule.