RDNZ actively engages with rare disease issues by responding to calls for submissions.
Submission to Pharmac’s review proposal to phase out funding of food thickeners
Rare Disorders NZ proposes that Pharmac does not phase out food thickeners but widen access to include other causes of dysphagia and rare disorders such as Head and Neck cancer.
Submission to Pae Ora Health of Disabled People Strategy
For most rare disorder patients, they experience forms of disability as a result of their condition. Unfortunately, the existing disability support system has proven unable to consistently meet the needs of the rare disorder community in New Zealand.
Submission to the Pae Ora Women’s Health Strategy
Rare disorders affect women, in fact possibly more so than other groups of the population, especially due to women often taking the main carer role.
Submission on the Therapeutic Products Bill
RDNZ is concerned about the risk-proportionate approval systems to ensure New Zealanders especially those living with a rare disorder can access necessary life-saving medicines.
Submission on Proposal to fund Risdiplam (Evrysdi) for Spinal Muscular Atrophy
Rare Disorders NZ fully support the consultation and funding of this drug/medicine as outlined in the consultation proposal.
RDNZ's Submission on rule 8.1b
Rare Disorders NZ supports the expansion of rule 8.1b to include all children with serious illnesses, including those with rare disorders and other life-threatening illnesses where there is a medicine available – currently funded or not.
Request for review of Covid 19 Anti Viral Criteria
Rare Disorders NZ wrote to Pharmac requesting a review to widen access of Covid-19 anti-viral criteria for those living with a rare disorder.
Submission on precision health consultation
Precision health offers an opportunity to make significant real progress in all these areas for those living with a rare disorder now and in the future.
RDNZ’s feedback on the proposal to fund Trikafta for people wih cystic fibrosis
RDNZ provided feedback under Pharmac's consultation process on the proposal to fund Trikafta for people with cystic fibrosis (CF) aged 6 years and over from 1 April 2023.
RDNZ's feedback on proposal to fund Nusinersen (Spinraza) for Spinal Muscular Atrophy
Rare Disorders NZ fully support the consultation and funding of this drug/medicine as outlined in the consultation proposal. However, we do ask that Pharmac consider our following recommendations in addition.