This global patient registry is being conducted to characterize the natural history and real-world clinical management of patients with AHP, and to further characterize the real-world safety and effectiveness of givosiran and other approved AHP therapies.

Help develop a handbook for EPP parents by sharing your experiences in this brief survey.

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.

This study collects information on acute attacks that may have been caused by a medication.

Study to better understand why some patients with EPP and XLP experience more severe symptoms than others.