Submissions
RDNZ actively engages with rare disease issues by responding to calls for submissions.
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.
Submission to Pharmac on proposal to change the access criteria for COVID-19 antiviral treatments
Rare Disorders NZ has been advocating for the widening of access to COVID-19 antiviral treatment for some time and has made a submission to Pharmac on the proposal to change the access criteria.
Submission to Pharmac on Proposal to fund Emicizumab for severe Haemophillia A
Rare Disorders NZ supports the proposal to widen access to emicizumab, brand name Hemlibra, for the treatment of severe Haemophilia A without FVIII inhibitors, subject to eligibility criteria.
Submission to Pharmac on Proposal to fund Ocrelizumab for Primary Progressive Multiple Sclerosis
Rare Disorders NZ supports the changes proposed to the Special Authority Criteria to include access for people with PPMS for Ocrelizumab specifically.
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.