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

 

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

Jul 5, 2018, 10:40 AM
Submission to Pharmac Consumer Voice

The patient voice should be included from the start to ensure equity for all people requiring pharmaceutical treatment.

May 17, 2018, 8:37 AM
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.