About this Survey
This survey is being conducted by The Mighty on behalf of a biopharmaceutical company. The purpose of the survey is to learn more about the experiences of patients and caregivers living with rare conditions. This survey is completely voluntary, and you can stop at any time. There are no right or wrong answers – just answer as accurately as you can.
What will happen during the research?
You will be asked to participate in an online survey about your experiences with a rare condition. This will take about 5-10 minutes to complete.
How will my information be used and protected?
- The Mighty will store and share data from this survey using encryption and password protection to carefully limit access to your data.
- De-identified data may be shared with the biopharmaceutical company behind this survey, and other education and advocacy initiatives. We will only share the responses you give in this survey. We will not share information that could identify you personally (such as name or email address).
What are the risks of participating?
Information you share will be used solely to help others better understand the experiences of those with a rare condition. The risk of participation is access to personal and confidential information.
What are the potential benefits of participating?
This survey does not provide treatment or medical advice of any kind. Therefore, there are no direct benefits to you. However, information learned may help other people better understand the challenges associated with rare conditions.