News

More Springtime Light Exposure, Better Sleep With Scenesse: Study

Adults with erythropoietic protoporphyria (EPP) treated with Scenesse (afamelanotide) spent more time exposed to light in springtime, experienced less pain, and slept better, according to a small case-controlled study. These patients, who experience skin hypersensitivity to sunlight, tolerated increased broad-spectrum white light exposure in the spring months, the…

United Porphyrias Association Launches, Will Advocate for Patients

The porphyria community has a new patient advocacy organization in the United Porphyrias Association (UPA), a newly launched nonprofit that seeks to advance disease awareness, as well as research and treatment development. The Maryland-based organization will strive to enhance patients’ lives through improved diagnostics, porphyria management, and an emphasis…

Women on Preventive Heme Arginate Have Fewer Acute Attacks

Women with acute intermittent porphyria (AIP) receiving once-weekly preventive treatment with heme arginate — given as an intravenous or into-the-vein infusion — had fewer and less severe attacks, a small study found. Indeed, these AIP patients saw a reduction in acute attacks by more than 80% with the use…