The latest updates from RDNZ and the rare disorder community. 

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.

Nov 9, 2022, 11:17 PM
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.

Oct 26, 2022, 10:28 AM
Experts convene to discuss NZ’s poor track record on rare disorders

Rare disorder experts from around the world, including New Zealand, are convening for a virtual roundtable today to discuss the dire situation for people living with a rare disorder in New Zealand.

Oct 17, 2022, 12:25 AM
RDNZ makes submission on the Accessibility for New Zealanders Bill

Rare Disorders NZ made a submission on the Accessibility for New Zealanders Bill expressing concern that the current bill will not remove barriers or deliver real progress for disabled people.