Spotlight Porphyria
Welcome to Spotlight Porphyria where we feature all things porphyria! Including:
Porphyria Voices shares experiences, insights, and advice from the porphyria community.
What's UP Doc? Where porphyria experts take your questions.
Summing UP explains the latest research in easy-to-understand summaries
Meet your experts and advocates where we meet the people changing the world for porphyria
…and more!
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Patient Day Feature: EPP & XLP Guidelines with Dr. Amy Dickey
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.
Meet Dr. Amy Dickey
My connection to porphyria is a bit more personal than a lot of other researchers. I have EPP porphyria.
Annual Check ups for inactive AIP
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?
EPP and iron supplements
Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?
EPP and porphyrin damage
Question: We know that extra porphyrins are what makes the skin hurt when my son has an EPP reaction but are they doing any damage on the inside of the body?