Survey: Understanding EPP/XLP Pain
Researchers at Stanford University are conducting a research study to better understand the pain experienced by people with EPP and its impact on quality of life and daily behaviors.
Participation involves completing a ~10 minute online survey.
Who can participate?
Adults (age 18+) with a confirmed diagnosis of EPP/XLP
Children (age 12-17) with a confirmed diagnosis of EPP/XLP
Parents of a child (12-17) with a confirmed diagnosis of EPP/XLP
Can be anywhere in the world, must understand/read English well enough to answer questions.
Additional Details for Parents of a Child with EPP/XLP
Parents of a child with EPP/XLP will first complete a parent survey and will then be directed to a separate survey for their child to complete.
If you are an adult with EPP/XLP and also have a child with EPP/XLP, you can do both the adult and parent surveys by using the survey link twice: first by clicking “I am an adult with EPP” and then opening the survey link again and clicking “I am a parent of a child younger than 18 years old with EPP”.