The latest updates from RDNZ and the rare disorder community.
The Annual General Meeting of Rare Disorders NZ will take place on Thursday 26 September from 10-10.30am at our offices in Newtown.
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.
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.
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.
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.
Rare Disorders NZ is thrilled to confirm the appointment of Lisa Foster as Chief Executive.
Today the New Zealand Organisation for Rare Disorders changes its name after 19 years of supporting thousands of families living with rare health conditions.
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.