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.

What's UP Doc? Live- Acute Porphyrias Bonus Questions
What's UP Doc? Live- Acute 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.

Meet Colin, Porphyria Advocate
Meet Colin, Porphyria Advocate
March 5, 2024

"I want to turn what I went through into something good, because otherwise it’s just suffering for the sake of suffering, and I can’t accept that. I want to do something more with my story."

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. 

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?

Patient Day Feature: Power Study Findings with Dr. Rebecca Karp Leaf
Patient Day Feature: Power Study Findings
November 7, 2023

From chronic pain, impacts on mental health, limitations to employment, the POWER study captures the realities of living with acute hepatic porphyria from patients around the world.
 

What's UP Doc?
What's UP Doc? Acute porphyria and liver tests
October 23, 2023
By Dr. Manish Thapar

Question: If you have acute porphyria, why is it important to have your liver function checked annually? What can you do to prevent issues with your liver?

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.

What's UP Doc? Dr, Amy Dicky - Annual Check ups for inactive AIP
What's UP Doc? Annual check ups for inactive AIP
September 18, 2023
By Dr. Amy Dickey

Question: I have AIP. I haven’t had a porphyria attack for several years and I don’t have a porphyria specialist. Is there anything I should ask my doctor to check for during my annual check-up?

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.