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.

Mental health is a major issue for people with rare disorders, and the people who care for them - 50% of patients with rare disorders are children, and 30% of those children will die before they are five years old. Many rare disorders are life-limiting and difficult to manage. In a survey undertaken by EURORDIS-Rare Diseases Europe, it was found that patients and carers are three times more likely to suffer depression than the general population. NZORD believes the figures would be similar in New Zealand due to the current barriers in our health system for rare disorder patients.

RDNZ (formerly NZORD) submission to the Mental Health Inquiry (PDF)

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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