News
The latest updates from RDNZ and the rare disorder community.
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.
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.
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.
Reformed health system must deliver for neurological conditions
The Neurological Alliance, with Rare Disorders NZ's support, sent two letters on Monday 3 October on the Alliance's position in relation to the Health Reforms, the new health system and engagement.