Submissions
RDNZ actively engages with rare disease issues by responding to calls for submissions.
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.
RDNZ's submission on Accessibility For New Zealanders Bill
Rare Disorders NZ made a submission on the Accessibility for New Zealanders Bill and encourages anyone with an interest in this area to make a submission by 7 November 2022.
RDNZ's submission on He Ara Āwhina Framework for mental health and addiction
Rare Disorders NZ has made a submission to the Mental Health and Wellbeing Commission on the He Ara Āwhina (Pathways to Support) framework, which describes what an ideal mental health and addiction system looks like.
RDNZ Submission on Highest Needs Review
Rare Disorders NZ has made a submission to the Ministry of Education’s Highest Needs Review and is encouraging anyone with an interest in this area to also make a submission by 31st March 2022.
RDNZ's submission on Pae Ora (Healthy Futures) Bill
Those living with a rare disorder in New Zealand experience inequitable, ineffective, and/or no access to the diagnostic and treatment services they require for them to have healthy futures.
Rare Disorders NZ Submission on content for the 2023 New Zealand Disability Survey
Rare Disorders NZ has made a submission to the “Consultation on content for the 2023 10-year New Zealand Disability Survey” on behalf of the rare disorder community as we do not feel those with a rare disorder have been included in the survey questions.
HEALTH SELECT COMMITTEE SUBMISSION: Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework
Rare Disorders NZ submission to the Health Select Committee in response to the Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework
PHARMAC Review Panel presentation
RDNZ presented a collective response on behalf of all those with medicines access issues who live with a rare disorder to the PHARMAC Review Panel in June.