The latest updates from RDNZ and the rare disorder community.
Tracey's workshop was dedicated to addressing some of the challenges faced by those with rare disorders to help in creating a vision for navigating their own complex health journey.
There needs to be greater recognition of rare disorders by those who have the power to help, says New Zealand Organisation for Rare Disorders chief executive Dr Collette Bromhead.
The inaugural Rare Disease Day Awards have been established to honour and recognise ordinary people who have made a positive impact through patient support, advocacy, research and clinical practice.
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.