News

Iron supplements may cause side effects for EPP patients

Oral iron supplements may help people with erythropoietic protoporphyria (EPP) build back their iron reserves and increase the levels of hemoglobin — the iron-containing protein that carries oxygen in red blood cells — a small study in Denmark suggests. However, even when taken at small doses over a short…

Risk factors, effective treatments for PCT identified in study

Heavy alcohol consumption and hereditary hemochromatosis, a genetic disorder characterized by iron overload, are the leading risk factors for porphyria cutanea tarda (PCT), the most common form of porphyria, according to a retrospective 35-year follow-up study conducted in Scotland. Disease remission was more commonly achieved by patients who had…

Painful skin condition eases after man’s HIV was treated

The human immunodeficiency virus (HIV) was the trigger for porphyria cutanea tarda, a condition characterized by painful, blistering skin lesions from sun exposure, for a 33-year-old man in Spain, according to a recent case report. Once his HIV was under control, his porphyria also eased. His case was described…

CTX450 gene-editing therapy shows promise in AHP mouse model

CTX450, an investigational gene-editing therapy for acute hepatic porphyria (AHP), was able to normalize disease-associated biomarkers in a mouse model, showing its potential as a one-time intervention for the disease. CRISPR Therapeutics, the treatment’s developer, plans to launch studies to secure approval for first-in-human clinical trials, which are…

Supporters go #PurpleforPorphyria to mark Global Porphyria Day

For this year’s Global Porphyria Day on May 18, supporters are encouraged to wear purple, decorate their homes in purple, and take to social media using the hashtag #PurpleforPorphyria to raise awareness about porphyria and share their stories. Advocacy organizations, including the United Porphyrias Association (UPA) and the Global…

Supplements essential for common vitamin D deficiency in EPP: Study

Vitamin D supplementation significantly increases the levels of vitamin D and reduces its deficiency, which is prevalent in adults with erythropoietic protoporphyria (EPP), regardless of whether they’re being treated with Scenesse (afamelanotide), a recent study reports. However, treatment with Scenesse did not significantly affect the levels of vitamin D…