News
The latest updates from RDNZ and the rare disorder community.
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.
RDNZ advocacy and services
RDNZ was invited to present at the Tuberous Sclerosis Conference in Wellington in October.
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.
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.