Submission to Mental Health Enquiry
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.