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RDNZ actively engages with rare disease issues by responding to calls for submissions.
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
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.
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
Subject: Request for New Zealand to support a UN Political Declaration on UHC that addresses the needs of persons living with a rare disease
The patient voice should be included from the start to ensure equity for all people requiring pharmaceutical treatment.
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.