We’re hoping that responses will represent a cross section of New Zealanders with a rare disorder, and participation is invited from all ages, locations and ethnic groups. If you or your whānau identify as Māori please indicate this in the appropriate field.

You are invited to participate in this survey because you are living with a rare disorder in Aotearoa New Zealand, or you are the primary carer. The questions refer to the person living with the rare disorder. This may be you or someone you care for. If there is more than one person in your household living with a rare disorder, please fill in a separate survey for each person.

Your participation in this survey is voluntary. You may choose not to participate. If you decide to participate in this survey, you may withdraw at any time. If you decide not to participate, or if you withdraw from participating at any time, you will not be penalised.

The procedure involves completing an online survey that will take approximately 20-30 minutes. Your responses will be confidential and we do not collect identifying information such as your name, email address or IP address. The survey questions are designed to understand the impact of living with a rare disorder, treatments that are available or accessible and your overall treatment experience.

We will keep your information confidential. All data will be stored in a password protected electronic format. To help protect your confidentiality, survey results will not contain information that will personally identify you. The results of this survey will be used in advocacy work for the rare disorder community in NZ Aotearoa with a focus on highlighting the impact of living with a rare disorder and improving access to treatments and health services.

If you have any questions about the survey, please contact Rare Disorders NZ at enquiries@raredisorders.org.nz