The latest updates from RDNZ and the rare disorder community.
This survey is open to anyone who is living with a rare disorder in NZ, as well as their family members and carers.
Rare Disorders NZ supports mandatory fortification of bread with folic acid to reduce neural tube defects.
Lisa Foster was an invited speaker at the Asia Pacific Alliance of Rare Disease Organisations (APARDO) summit in Taiwan last month.
On 17 October 2019, Rare Voices Australia launched the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, at Parliament House.
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.
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.
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.