Longitudinal Study of the Porphyrias
Long-term study to learn more about the disease course and quality of life for all the porphyrias. Open to US residents with a confirmed diagnosis of porphyria.
Online AHP Drug Database
This study collects information on acute attacks that may have been caused by a medication.
EPP/XLP Gene Modifier Study
Study to better understand why some patients with EPP and XLP experience more severe symptoms than others.