News
The latest updates from RDNZ and the rare disorder community.
Media release: UN recognition for all people living with a rare disease
Rare Disorders NZ congratulates Rare Diseases International for ensuring that the UN Member States adopted a political declaration on universal health coverage that includes mention of rare diseases.
Media release: People with rare health conditions need equitable treatment
Rare Disorders NZ welcomes the Government’s recent announcement on cancer care and is urging consideration for a wider, inclusive plan to support all New Zealanders with chronic health conditions.
Rare Disorders NZ AGM
The Annual General Meeting of Rare Disorders NZ will take place on Thursday 26 September from 10-10.30am at our offices in Newtown.
Rare Disease Researchers’ Special Interest Group
The second Rare Disease Researchers’ Special Interest Group meeting with 14 key researchers in the fields of rare diseases took place on 2 August 2019 in Wellington at Victoria University’s Rutherford House.
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.
Human Genetics Society of Australasia (HGSA) August 2019: Winds of Change
The 43rd annual scientific meeting took place on 3-6 August 2019 in Wellington with the theme of Winds of Change to convey the importance of new developments in human genetics and genomics.
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.