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? Acute porphyria and pain
What's UP Doc? Acute porphyria and pain
February 25, 2022
By Dr. Mohamed Kazamel

United Porphyrias has received many questions about pain, most related to pain in the Acute Hepatic Porphyrias (AIP, VP, HCP, ADP). This week, we are addressing Pain in Acute Hepatic Porphyria in depth.

What's UP Doc?  Acute porphyria and liver health
What's UP Doc? Acute porphyria and liver health
February 11, 2022
By Dr. Herbert Bonkovsky

Question: My daughter (now age 26) has AIP. How will acute porphyria attacks impact her liver as she ages? She was diagnosed a few years ago and her last attack was several months ago. 

What's Up Doc? EPP and porphyrin damage
What's UP Doc? EPP and porphyrin damage
February 4, 2022
By Dr. Amy Dickey

Question:  We know that extra porphyrins are what makes the skin hurt when my son has an EPP reaction but are they doing any damage on the inside of the body?

What's UP Doc? Planning for an attack
What's UP Doc? Planning for an attack
January 28, 2022
By Dr. Karl Anderson

Question:  I was diagnosed with acute intermittent porphyria about two years ago. I’m always worried about my next attack. What plan should I have in place in the event of another attack? At what point do you think I shouldn’t try to go it alone without help?