The purpose of this research study is to explore the healthcare experiences of adults living with a rare disease within Australia. You are asked to complete this survey if you are:
• A person aged 18 years or older, living with a rare disease
• A carer or paid support worker is permitted to complete the survey if the person aged 18 years or older living with a rare disease does not have the intellectual and/or physical capability to complete the survey
The information you provide will be confidential and anonymous
For more information about this much needed research, and to take part in this survey click here.
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