2019 VOICE OF RARE DISORDERS SURVEY
The purpose of this survey is to provide insight into the impact for people like yourself who are living with a rare disease in this country. Cystic Fibrosis (CF) is considered a rare disease.

This is a survey project being conducted by Rare Disorders NZ and Cystic Fibrosis NZ, together with the support of Medicines NZ.

You are invited to participate in this survey because you are a person living with CF in NZ, or you are a family member and carer.

• If you are a person living with CF, please answer regarding your own personal situation
• If several people are affected by CF in your household, please consider the overall impact
• If you don't live in the person with CF' household permanently, please still answer on their behalf

Your participation in this survey is voluntary. If you decide to participate in this survey, you may withdraw at any time.

The procedure involves completing an online survey that will take approximately 25 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 impact of living with cystic fibrosis, 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, surveys 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 with a focus on the impact of living with a rare disease including people living with CF and improving access to treatments and health services.

ELECTRONIC CONSENT:

Clicking on the "agree" button below indicates that:

• you have read the above information
• you voluntarily agree to participate
• you are at least 18 years of age

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