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:
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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?
"Seeing patients and how it impacts them day-to-day, and how their families' lives are impacted, it’s a different level of understanding."
This research describes some important features of EPP including prodromal (warning) symptoms, a priming effect from previous light exposure, and lack of visible symptoms among many patients.
This article provides an overview of the different types of pain in acute hepatic porphyria (AIP, VP, HCP, ADP) and how they may be treated.
This article provides an overview of the current state of research and knowledge about the use of givosiran for treating acute hepatic porphyria, including how givosiran works, its results in clinical trials and the real world, and questions for future research.
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.
Check out this recording of UPA's Kristen Wheeden and Porphyria Expert Dr. Bruce Wang as they answered your porphyria questions live.
Question: Are there guidelines for managing erythropoietic protoporphyria (EPP) and x-linked porphyria (XLP)?
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?
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?