The latest updates from RDNZ and the rare disorder community.
Kia ora Gill, I wanted to touch base to let you know that we have published the advice and recommendations from the February 2019 Pharmacology and Therapeutics Advisory Committee (PTAC) meeting.
The National Organisation for Rare Disorders (NZORD) supports petitions for more effective, equitable outcomes for people with rare disorders, as part of a comprehensive, strategic approach for this vulnerable group of over 377,000 New Zealanders, half of whom are children.
Have your say on how the system is working currently and identify the issues most critical to improving the effectiveness and equity of the system.
A Therapeutic Products Bill is being developed to replace the Medicine Act 1981 and establish a new regulatory scheme for therapeutic products.
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.