RDNZ actively engages with rare disease issues by responding to calls for submissions.
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.
Letter to the NZ Ambassador to the UN about rare disease resolution
Subject: Request for New Zealand to support the adoption of a UN General Assembly Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families
Letter to NZ Ambassador to the UN about Universal Health Coverage
Subject: Request for New Zealand to support a UN Political Declaration on UHC that addresses the needs of persons living with a rare disease
Submission to Pharmac Consumer Voice
The patient voice should be included from the start to ensure equity for all people requiring pharmaceutical treatment.
Submission to Mental Health Enquiry
People with rare disorders are more likely to experience mental stress and depression.The stresses and mental hardships of living with a rare disorder were the focus of NZORD's submission to the Government's Mental Health Inquiry.