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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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.

What's UP Doc? Live on Global Porphryia Day
What's UP Doc? Live on Global Porphryia Day
April 19, 2023

In a special livestream for Global Porphyria Day 2023. UPA's own Kristen Wheeden and Porphyria Expert Dr. Bruce Wang answered your questions! Recording now available.

What's UP Doc? Live February 18, 2023
What's UP Doc? Live Februrary 18, 2023
February 18, 2023

Check out this recording of UPA's Kristen Wheeden and Porphyria Expert Dr. Bruce Wang as they answered your porphyria questions live.

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?  Panhematin History
What's UP Doc? Panhematin History
October 28, 2022
By Dr. Herbert Bonkovsky

Question: I have been treated with Panhematin for many years – and I’m interested in learning about how Panhematin was first used. Can you share that history with me and others?

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? Acute porphyria and kidney health
What's UP Doc? Acute porphyria and kidney health
July 15, 2022
By Dr. Herbert Bonkovsky

Question: I heard a doctor in a presentation say that people with porphyria should “look after their kidneys.” How do you do that?

What's UP Doc? PCT and menopause
What's UP Doc? PCT and menopause
June 24, 2022
By Dr. Herbert Bonkovsky

Question: Can starting menopause make PCT worse/relapse? (because phlebotomies are a treatment and if you stop having periods maybe iron builds up?)