The latest updates from RDNZ and the rare disorder community. 

Sep 2, 2019, 1:24 PM
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.

Aug 28, 2019, 11:08 AM
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.

Aug 28, 2019, 11:01 AM
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.

Aug 21, 2019, 1:54 PM
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.

Aug 15, 2019, 11:19 AM
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.

Jul 30, 2019, 2:12 PM
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.

Jun 27, 2019, 12:33 PM
Media release: Announcement of new Chief Executive

Rare Disorders NZ is thrilled to confirm the appointment of Lisa Foster as Chief Executive.

Jun 5, 2019, 12:21 PM
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.

May 9, 2019, 6:00 PM
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.

Apr 23, 2019, 4:59 PM
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.