News
The latest updates from RDNZ and the rare disorder community.
Media release: Rare Disorders NZ supports patient advocates
Rare Disorders NZ supports all people living with a chronic health condition who are brave enough to share their experiences with the media to advocate for changes in the health system.
Media release: Medicines access for cancer must also be Fair for Rare
Rare Disorders NZ welcomes the National Party’s recent announcement on cancer care but calls on both the opposition and the coalition government to widen their medicines access proposals beyond cancer to include provision for people living with rare disorders.
Media release: Announcement of new Chief Executive
Rare Disorders NZ is thrilled to confirm the appointment of Lisa Foster as Chief Executive.
Media release: NZORD changes name to Rare Disorders NZ
Today the New Zealand Organisation for Rare Disorders changes its name after 19 years of supporting thousands of families living with rare health conditions.
Outcome of February 2019 PTAC meeting
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.
Media release: NZORD supports rare medicine petitions to government
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.
New Zealand Health and Disability System Review
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.
Therapeutic Products Regulatory Scheme
A Therapeutic Products Bill is being developed to replace the Medicine Act 1981 and establish a new regulatory scheme for therapeutic products.
Education Session video
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.
NZ Herald article: Rare Disease Day
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.