EPP/XLP Gene Modifier Study

Study Purpose

To better understand why some patients with EPP and XLP experience more severe symptoms than others. This study is being performed by Dr. Mark Fleming at Boston Children’s Hospital and Dr. Amy Dickey at Massachusetts General Hospital.

Who can participate?

Families that have multiple people with a confirmed diagnosis of EPP/XLP (>2 years of age) are eligible to participate. Can live anywhere in the world.

How to participate

Please click here to submit a confidential interest form.