Description
Rare Disorders NZ will be launching a White Paper on the results of their biannual NZ Voice of Rare Disorders Survey that was carried out in the month of November 2021. Anyone living with a rare disorder in New Zealand was strongly encouraged to take part, as well their family and carers. The data from this survey will be used in advocacy work for the rare disorder community in NZ, with a focus on highlighting the impact of living with a rare disorder and improving access to treatments and health services.