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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Meet Craig Leppert, Shadow Jumpers Founder
Meet Craig Leppert, Shadow Jumpers Founder
April 24, 2024

"I realized that my condition with the sun was either going to define my life or become a cool addition to the story of my life."

Summing UP: Quantifying the impact of symptomatic acute hepatic porphyria on well-being via patient-reported outcomes
Summing UP: POWER Study for Acute Hepatic Porphyrias
April 7, 2024

Up to this point, most research that has been published about AHP has focused on symptoms and care during an acute attack. This research looks at the full burden of acute hepatic porphyrias (AHP, includes AIP, HCP and VP) on patients from around the world.

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.

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.