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 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?
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.
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?
In this Summing UP, researchers looked at 28 years of medical records to identify if women with AHP and their babies were at increased risk of pregnancy complications.
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?
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.
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 heard a doctor in a presentation say that people with porphyria should “look after their kidneys.” How do you do that?
Question: I am thinking about starting Givlaari injections. What tests should I have done before and during my treatment?