RDNZ actively engages with rare disease issues by responding to calls for submissions.

 

Oct 19, 2022, 10:21 PM
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.

Oct 17, 2022, 12:06 AM
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.

Mar 31, 2022, 1:57 PM
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.

Mar 2, 2022, 10:33 PM
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.

Dec 8, 2021, 2:32 PM
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.

Oct 12, 2021, 1:09 PM
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.

Aug 16, 2021, 12:03 PM
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

Jul 15, 2021, 9:16 AM
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.

Jun 9, 2021, 9:36 AM
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

Sep 4, 2019, 11:49 AM
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