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: Where we get to know the experts a little better
  • Special events and recordings
  • New research opportunities
  • And more....

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What's UP Doc? Live- Cutaneous Porphyrias Bonus Questions
What's UP Doc? Live- Cutaneous Porphyrias Bonus Questions
March 27, 2024

Dr. Bruce Wang answers the questions about acute hepatic porphyrias that we didn't get to in the Facebook Live Q&A on February 24, 2024.

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).

Patient Day Feature: EPP & XLP Guidelines with Dr. Amy Dickey
Patient Day Feature: EPP & XLP Guidelines
November 28, 2023

The diagnosis and treatment of rare conditions like EPP and XLP can be confusing for doctors and patients alike. Join Dr. Amy Dickey as she walks us through the recommendations from the new consensus guidelines for diagnosing and managing protoporphyrias.

What's UP Doc?
What's UP Doc? Surgery precautions and cutaneous porphyrias
November 13, 2023
By Dr. Herbert Bonkovsky

Question: I am having a planned laparoscopic surgery next week.  Should there be a filter on the light on the laparoscope?  If so, would you be able to tell me what filter would need to be used?  Can you also tell me what filters would be needed for the surgery lights in the operating room?

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: 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.

What's UP Doc?  Protoporphyria Guidelines
What's UP Doc? Protoporphyria Guidelines
December 2, 2022

Question: Are there guidelines for managing erythropoietic protoporphyria (EPP) and x-linked porphyria (XLP)?

What's UP Doc?  EPP and bone health
What's UP Doc? EPP and bone health
September 19, 2022
By Dr. Sioban Keel

Question: I’ve heard that vitamin d deficiency can cause osteoporosis, and that sunlight is the main way you get vitamin D. If you have to stay out of the sun to avoid a reaction, what are things you can do to keep your bones strong?

What's UP Doc? Porphyrias Consortium
What's UP Doc? Porphyrias Consortium
April 22, 2022
By Dr. Hetanshi Naik

What is the Porphyrias Consortium? Why is it so important? What do they do?

What's UP Doc? Enzymes and porphyria
What's UP Doc? Enzymes and porphyria
April 15, 2022

What are enzymes and why they are important in the porphyrias?