The latest updates from RDNZ and the rare disorder community. 

Mar 17, 2023, 10:29 PM
Celebrating rarity at the Rare Beer Challenge 2023

Basing a beer on the 90s cult movie The Big Lebowski turned out to be a winning idea for Heyday Beer Co, as they took out the top prize with their Lingonberry Pancake Ale at this year’s Rare Beer Challenge hosted by Fortune Favours on 10th March.

Mar 16, 2023, 12:25 AM
RDNZ makes submission to the Pae Ora Women’s Health Strategy

Rare Disorders NZ has made a submission to the Pae Ora Women’s Health Strategy.

Mar 13, 2023, 12:21 AM
Ministry of Health's plan to develop Rare Disorders Strategy

The Ministry of Health have developed an outline plan on the scope, engagement and outcomes for the national rare disorders strategy.

Feb 28, 2023, 10:24 PM
Aotearoa called to #GlowUpShowUp for Rare Disorders Month

RDNZ is calling on Aotearoa to Glow Up and Show Up for the rare disorder community throughout March in recognition of a population who has been left in the dark for too long.

Feb 23, 2023, 10:36 PM
RDNZ supports Pharmac's proposal to fund risdiplam for SMA

Pharmac is proposing to fund Risdiplam (Evrysdi) for the treatment of symptomatic type 1, 2 and 3a Spinal Muscular Atrophy from 1 May 2023 for those who begin treatment before the age of 18.

Feb 19, 2023, 11:43 PM
RDNZ calls for expansion of rule 8.1b in consultation submission

Rare Disorders NZ will make a submission to Pharmac’s review of rule 8.1b of the Pharmaceutical Schedule.

Feb 13, 2023, 10:35 PM
RDNZ requests widening of access to Covid-19 anti-virals

Rare Disorders NZ recently wrote to Pharmac requesting a review to widen access of Covid-19 anti-viral criteria for those living with a rare disorder.

Jan 27, 2023, 2:40 PM
RDNZ makes submission on Precision Health consultation

Rare Disorders NZ believes that precision health provides great opportunity to significantly improve diagnosis, care and treatment, screening, and managing genetics and hereditary issues in families for rare disorders.

Jan 23, 2023, 10:20 PM
Rare Disorders NZ meeting with Pharmac on NPPA Process

On 28 November, Rare Disorders NZ had a meeting with Pharmac to discuss the existing NPPA (Named Patient Pharmaceutical) policy. Rare Disorders NZ have long held a number of concerns around the NPPA process in its current format.

Nov 29, 2022, 2:32 PM
New Zealanders affected by rare disorders share their struggles with education system at international UN-agency meeting

Two representatives from the rare disorder community in New Zealand are today participating in a UNESCO-led international meeting to discuss better inclusion in the education system for children living with a rare disorder.