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- 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.

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?
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?

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?

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?