The latest updates from RDNZ and the rare disorder community.
Four-year-old Evie from Tauranga is one of the most unique children in the country – and the world.
Dr Greer is a former NZORD board member with a wealth of experience in not-for-profit organisations.
The Subcommittee met on 5 and 6 November 2018 and has recommended that four medicines be funded, and five be declined for funding.
RDNZ was invited to present at the Tuberous Sclerosis Conference in Wellington in October.
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.