EPP/XLP Questionnaire
Thank you to everyone who completed this questionnaire! Once results are available, we will share them here.
Do you have EPP or XLP? You may qualify to take a 60-minute online questionnaire and receive a $100 Amazon gift card for your time:
👉Reside in US or Canada
👉Age 12+
👉Speak/read English
👉Must provide confirmation of your diagnosis
The goal of this questionnaire is to better understand how EPP/XLP impacts the lives of individuals with this condition. The questionnaire will ask you about symptoms you may experience, how you are feeling, and how EPP may impact your life. You will also be asked about visits to the doctor/hospital and any medications you may have taken for your EPP and your preferences for various types of EPP treatments.
After you complete the online questionnaire, you will receive a $100 Amazon gift card for your time.
Once the study is completed, a brief report that summarizes the results from all participants will be available to you.