IRB # 0614-21-EX

My name is Michelle Willes and I am a genetic counseling student at the University of Nebraska Medical Center. I am conducting a research study to better understand the experience of navigating payment and insurance coverage for medical costs associated with a rare disease diagnosis.

Eligible participants will be persons 19 years of age or older who have a rare disease diagnosis or are a parent or guardian of an individual with a rare disease diagnosis. Participants must be receiving healthcare through the United States healthcare system and be actively involved in navigating payment and insurance coverage for a rare disease diagnosis.

Your participation in this study is completely voluntary. By completing this online survey, you are agreeing to participate in the study. This survey will ask about your rare disease diagnosis, your experience with health insurance coverage and your awareness of financial resources for rare disease diagnoses. Your responses are completely anonymous, and your answers will remain confidential. There are no direct benefits or risks associated with participating in this study. This survey will take approximately 15-20 minutes to complete.

If you have any further questions or concerns about this research study, please contact me at

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