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....

Sign up to never miss a feature!

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.

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.

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? 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.

Patient Day Feature: EPP & XLP Guidelines with Dr. Amy Dickey
Patient Day Feature: EPP & XLP Guidelines

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.