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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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.

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?

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?

What's UP Doc?  Making a health care team
What's UP Doc? Making a health care team
March 25, 2022
By Dr. Bruce Wang

Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?

What's UP Doc? CEP and dental care
What's UP Doc? CEP and dental care
March 18, 2022
By Dr. Angelika Erwin

Question: What extra precautions should I take when I am having my teeth cleaned or any dental work? I have CEP and want to talk to my dentist in advance.