ELEVATE, a Registry of Patients With AHP
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.
Mental Health Focus Group- Acute Porphyrias
This focus group with focus on mental health and mental health resources for the acute hepatic porphyrias.
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.