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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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."

Patient Day Feature: Power Study Findings with Dr. Rebecca Karp Leaf
Patient Day Feature: Power Study Findings
November 7, 2023

From chronic pain, impacts on mental health, limitations to employment, the POWER study captures the realities of living with acute hepatic porphyria from patients around the world.
 

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?

Meet Dr. Manish Thapar
Meet Dr. Manish Thapar
October 17, 2023

"It’s been really eye-opening to see how important patient involvement is in rare disease.  Patients can drive the field, move the field. Rare diseases like porphyria are very life-altering. Patients have an important role in how the regulatory agencies and how physicians are looking at the disease and what the outcomes are."