Every single person with PXE experiences the disorder differently. Because of that, it’s very hard to know if one person’s change in diet/exercise will affect another person with PXE. In order to better understand the progression of PXE we need to know where we are now. This study seeks to evaluate a group of people willing to participate in a long term study of PXE symptoms. If you have PXE, you can start by completing our PXE & LIFE survey!
Please share your thoughts, ideas, and questions on the Long-Term Follow-up Study and check out this page for future updates! If you are interested in becoming part of the Long-Term Follow-up Study Research Team to plan this study, email Eliza at firstname.lastname@example.org.