PULSE is the largest study of its kind in the world for people living with porphyria. For more than 15 years, participants have shaped how porphyria is diagnosed and cared for.
Now you can join from anywhere in the U.S

Help UPA better understand the porphyria community’s experiences with health insurance coverage. What we learn will help us provide stronger support and resources related to coverage for clinical care and current and future treatments.

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

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.

Sponsored by Portal Therapeutics. This study tracks the disease and its impact on individuals living with Erythropoietic Protoporphyria (EPP) or X-Linked Protoporphyria (XLP).

You do not need to have porphyria to participate in porphyria research. Learn how you can get involved!

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.