The latest updates from RDNZ and the rare disorder community.
Rare disorder researchers’ meeting
New Zealand’s first meeting of rare disorder researchers took place at Otago University last month.
Support for rare
The Australian Government has announced support for a National Rare Disease Framework and Action Plan.
Applications for medicines for rare disorders
PHARMAC has received 13 supplier funding applications for medicines for rare disorders.
PHARMAC proposal open for feedback
PHARMAC is proposing to change how three hospital medicines are managed within the Pharmaceutical Schedule.
Rare disease researchers awarded
NZORD recognised two rare disease researchers at the Queenstown Research Week Satellite on Rare Brain Diseases meeting last week.
Research on Parkinson’s disease
Research on a rare form of Parkinson’s disease may have wider benefits for future cancer treatments.
Folic acid fortification
A new report, commissioned by the Ministry of Health, has concluded that the benefits of mandatory fortification of bread with folic acid outweigh any possible adverse effects.
Unified voice for carers
NZORD’s Relationship Manager, Lisa Crawford, attended the Carers Alliance meeting on 26 July, an alliance of 45 national not-for-profit organisations.
Meet the Kiwi DNA detective helping kids across the world
NZORD board member Professor Stephen Robertson is a world-renowned paediatric geneticist.
Running for rare disorders
A science student is running her first marathon to raise money for NZORD and the rare disorder community in New Zealand.