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.

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: Evidence based consensus guidelines for diagnosis and management of erythropoietic protoporphyria and X-linked protoporphyria
Summing UP: EPP/XLP Consensus Guidelines
March 3, 2024

This article provides guidelines for the diagnosis, treatment and management of erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP).

Meet Honorable Joe Crowley, UPA Director and Former Congressman
Meet Honorable Joe Crowley, UPA Director and Former Congressman
February 22, 2024

"Building that connection with your elected officials can help sensitize them to that reality and keep them engaged in rare disease issues."

Meet Kristen Wheeden, UPA President
Meet Kristen Wheeden, UPA President
January 26, 2024

"Collaboration between patients, caregivers, advocates, expert physicians, industry partners and regulators is necessary to realize advancements in porphyria. All of us doing our important roles can lead to better diagnostics, new therapies and better quality of life for our patient community."

 

Meet Dr. Herbert Bonkovsky
Meet Dr. Herbert Bonkovsky
December 4, 2023

"With rare diseases, you could call every patient a clinical trial of one because each one is unique. It is important to listen to them and try to address their symptoms."

Patient Day Feature: EPP & XLP Guidelines with Dr. Amy Dickey
Patient Day Feature: EPP & XLP Guidelines
November 28, 2023

The diagnosis and treatment of rare conditions like EPP and XLP can be confusing for doctors and patients alike. Join Dr. Amy Dickey as she walks us through the recommendations from the new consensus guidelines for diagnosing and managing protoporphyrias.

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?

Meet Padmini Pillai, PhD and UPA President's Council Chair
Meet Padmini Pillai, PhD and UPA President's Council Chair
November 12, 2023

"You have to figure it out for your own body and trust that you know your body better than anybody else. I think that's where having a community of other patients and patient advocates is important because it can give you that confidence, security, friendship, and empathy that you're doing what's right for you."