The latest updates from RDNZ and the rare disorder community. 

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.

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.

Sep 3, 2018, 11:33 AM
Rare disease researchers awarded

NZORD recognised two rare disease researchers at the Queenstown Research Week Satellite on Rare Brain Diseases meeting last week.