Submissions
RDNZ actively engages with rare disease issues by responding to calls for submissions.
Submission on Review of Disability Support Services
Rare Disorders NZ along with other disability organisations have jointly submitted a report addressing the critical issues and challenges affecting Disability Support Services and access by the patient/consumer groups we represent.
Submission on proposal to fund supplements for phenylketonuria and other inherited metabolic disease
Rare Disorders NZ welcomes Pharmac expanding the range of supplements available to provide greater choice and improve the lives of people with Phenylketonuria (PKU) and other inherited metabolic disease.
Submission by AGenDA on the Contracts of Insurance Bill
The Contracts of Insurance Bill provides a unique opportunity for AGenDA to draw attention to New Zealand’s Insurance Law framework's lack of protection against genomic discrimination, making it the only OECD country without such protection.
Budget Policy Submission
Rare Disorders NZ has made a Budget Policy Submission to the Finance and Expenditure Committee.
Submission on proposal to fund continuous glucose monitors, insulin pumps, and insulin pump consumables
We welcome the inclusion of pancreatogenic diabetes mellitus in the conditions that these products are proposed to be funded for, and appreciate that the definition used includes rare causes of pancreatogenic diabetes like Cystic Fibrosis and Permanent Neonatal Diabetes Mellitus.
Submission to the New Zealand Royal Commission COVID-19 Lessons Learned Te Tira Ārai Urutā public consultation
Rare Disorders NZ commends New Zealand's public health response to the COVID-19 pandemic that meant mortality from Covid-19 in New Zealand has been kept relatively low compared to other similar nations. To perform better in any future pandemic or health crises, it is crucial to acknowledge that individuals within the rare disorder community have encountered significant challenges from the onset of the pandemic until today. These challenges are likely to persist in the future, both concerning COVID-19 and beyond.
Submission on proposal to fund vaccine for the prevention of shingles in immunocompromised people
Rare Disorders NZ supports the principles behind the proposal to widen the access for recombinant varicella zoster virus vaccine (branded as Shingrix) for prevention of shingles in immunocompromised people. However, we are concerned by the very narrow criteria.
Submission to Pharmac on proposal to decline inactive funding applications
Rare Disorders NZ is pleased to see Pharmac aiming to provide more clarity about which medicines they are actively considering for funding.
Submission to Pharmac on Proposal to fund supplements for phenylketonuria
We are pleased to see that people with phenylketonuria (PKU) are now having their unmet needs recognised, and New Zealand is making steps towards meeting internationally recognised standards of care.
RDNZ submission on draft statement on disclosure of harm following an adverse event
Rare Disorders NZ made a submission calling for misdiagnosis and delayed diagnosis to be recognised as causing harm.