The latest updates from RDNZ and the rare disorder community.
PHARMAC has released a report and action plan from their review of the role of the consumer voice in their work.
New Zealand’s first meeting of rare disorder researchers took place at Otago University last month.
The Australian Government has announced support for a National Rare Disease Framework and Action Plan.
PHARMAC has received 13 supplier funding applications for medicines for rare disorders.
PHARMAC is proposing to change how three hospital medicines are managed within the Pharmaceutical Schedule.
NZORD recognised two rare disease researchers at the Queenstown Research Week Satellite on Rare Brain Diseases meeting last week.
Research on a rare form of Parkinson’s disease may have wider benefits for future cancer treatments.
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.
NZORD’s Relationship Manager, Lisa Crawford, attended the Carers Alliance meeting on 26 July, an alliance of 45 national not-for-profit organisations.
NZORD board member Professor Stephen Robertson is a world-renowned paediatric geneticist.