The United Porphyrias Association is proud to work closely with the porphyria experts on the UPA's Scientific Advisory Board and at the Porphyrias Consortium.
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Liver dysfunction is a rare but very real possibility for people with EPP and XLP. These guidelines provide recommendations for the diagnosis, monitoring and treatment of liver-related dysfunction in protoporphyrias (EPP and XLP).
In this Summing UP, researchers looked at 28 years of medical records to identify if women with AHP and their babies were at increased risk of pregnancy complications.
This research describes some important features of EPP including prodromal (warning) symptoms, a priming effect from previous light exposure, and lack of visible symptoms among many patients.
This article provides an overview of the different types of pain in acute hepatic porphyria (AIP, VP, HCP, ADP) and how they may be treated.
This article provides an overview of the current state of research and knowledge about the use of givosiran for treating acute hepatic porphyria, including how givosiran works, its results in clinical trials and the real world, and questions for future research.