EPP/XLP Parents Questionnaire

OPEN TO PARENTS OF A CHILD WITH EPP (ANY AGE/ANYWHERE)

This project is dedicated to understanding the experiences of parents of children with EPP.

With our partners at Shadow Jumpers and at Stanford University, our goal is to collect insights from parents and use this information to develop a handbook to help assist other parents who are navigating similar experiences.

We would appreciate your participation in a brief 10–15-minute survey where you can share your experiences. Your input will play a crucial role in helping future parents gain valuable guidance.The survey is completely voluntary and anonymous. If you would be willing to participate, simply click here.

If you have any questions or would like more information about the project, please contact Hetanshi Naik (naikh@stanford.edu) or Craig Leppert (craig@shadowjumpers.org).