News
The latest updates from RDNZ and the rare disorder community.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Reducing access to cancer medicine for children to improve equity unacceptable, says Rare Disorders NZ
Rare Disorders NZ is deeply concerned that Pharmac’s announced review of rule 8.1b of the Pharmaceutical Schedule may lead to reduced access to medicines for children with cancer.