The latest updates from RDNZ and the rare disorder community. 

Oct 28, 2021, 11:44 AM
Rare Disorders NZ invited to present at an International United Nations event

Rare Disorders NZ and Patient Voice Aotearoa will be presenting at an international virtual event with high level stakeholders to bring attention to spinal muscular atrophy (SMA) – a rare, inherited neuromuscular disease.

Oct 18, 2021, 12:58 PM
Children’s Day 2021 colouring competition

The Kōtare (sacred kingfisher) is a taonga of Aotearoa New Zealand. It is common, but is not often seen. That’s why they’re a perfect symbol for rare disorders. As part of our ongoing ‘Fair For Rare’ campaign, we’re running a colouring competition for Children’s Day 2021 (November 20)

Oct 12, 2021, 5:39 PM
Submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey”

Rare Disorders NZ has made a submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey” on behalf of the rare disorder community as we do not feel those with a rare disorder have been included in the survey questions

Aug 16, 2021, 2:38 PM
Ministry of Health recommendation not to proceed with a rare disorder national framework

The Ministry of Health does not recommend the development of a national framework for rare disorders at this stage.

Aug 11, 2021, 11:06 AM
Please stop calling medicine funding a Trolley Problem: NZ Herald by James McGoram Chair Rare Disorders NZ

Pease stop calling medicine funding a Trolley Problem

Aug 2, 2021, 11:53 AM
Rare Disorders NZ AGM

The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 22 September from 10-10.30am at our offices in Newtown.

Jul 14, 2021, 1:22 PM
PHARMAC Review panel presentation

RDNZ presented a collective response on behalf of all those with medicines access issues who live with a rare disorder to the PHARMAC Review Panel last month.

Jul 8, 2021, 11:51 AM
Government to mandate folic acid in flour to protect babies

RDNZ has campaigned for more than a decade for the addition of folic acid to flour to reduce the number of babies born with neural tube defects.

Jul 2, 2021, 1:10 PM
Ministry of Health meeting: raising awareness of rare disorders

RDNZ recently organised a meeting with Ministry of Health officials to amplify the collective voice of people living with a rare disorder, with a focus on GP awareness and education.

Jul 1, 2021, 12:18 PM
Disability Rights Commissioner meeting

Our CE Lisa Foster recently met with Paula Tesoriero, the Disability Rights Commissioner, alongside support group leaders to represent the needs of the rare disorder community.