experts in action

Porphyria Experts in Action

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. 

We're pleased to introduce our Experts in Action where we'll feature:

  • Summing UP: Easy-to-understand summaries of recent and important scientific research
  • What's UP Doc? Where the experts answer your questions
  • Meet your experts and advocates: Where we get to know the people who are changing the world for porphyria
  • Special events and recordings
  • New research opportunities
  • And more....

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Summing UP: Quantifying the impact of symptomatic acute hepatic porphyria on well-being via patient-reported outcomes
Summing UP: POWER Study for Acute Hepatic Porphyrias
April 7, 2024

Up to this point, most research that has been published about AHP has focused on symptoms and care during an acute attack. This research looks at the full burden of acute hepatic porphyrias (AHP, includes AIP, HCP and VP) on patients from around the world.

Summing UP: Evidence based consensus guidelines for diagnosis and management of erythropoietic protoporphyria and X-linked protoporphyria
Summing UP: EPP/XLP Consensus Guidelines
March 3, 2024

This article provides guidelines for the diagnosis, treatment and management of erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP).

Summing UP: Acute hepatic porphyria and anaesthesia
Summing UP: Acute hepatic porphyria and anaesthesia
November 22, 2023

Surgery and the use of anesthesia require special considerations for patients with acute hepatic porphyrias (AIP, VP and HCP). Learn more about the recommended precautions for the period before, during and after an operation for patients with AHP. 

Summing UP: Evidence based consensus guidelines for diagnosis and management of Protoporphyria-Related liver dysfunction
Summing UP: EPP/XLP Liver Guidelines
October 16, 2023

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).

Summing UP: Maternal and fetal outcomes in acute hepatic porphyria
Summing UP: Maternal and fetal outcomes in acute hepatic porphyria
September 22, 2023

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.

Summing UP: Light-Related Cutaneous Symptoms of EPP and Associations With Light Sensitivity
Summing UP: Light-Related Cutaneous Symptoms of EPP and Associations With Light Sensitivity
August 24, 2023

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.

Summing UP: Pain in acute hepatic porphyrias
Summing UP: Pain in acute hepatic porphyrias
July 27, 2023

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.

Summing UP: RNA interference therapy in AHP
Summing UP: RNA interference therapy in AHP
June 22, 2023

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.