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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How many people have porphyria
What's UP Doc? Dr. Brendan McGuire What's UP Doc? Dr. Brendan McGuire

How many people have porphyria

Question: I understand that Porphyria is a rare disease and being recently diagnosed with AIP, I am trying to understand more and more. How many people in the US have porphyria? Which type of porphyria is the most common? The least common? How do you calculate these numbers?

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Acute porphyria and pain
What's UP Doc? Dr. Mohamed Kazamel What's UP Doc? Dr. Mohamed Kazamel

Acute porphyria and pain

United Porphyrias has received many questions about pain, most related to pain in the Acute Hepatic Porphyrias (AIP, VP, HCP, ADP). This week, we are addressing Pain in Acute Hepatic Porphyria in depth.

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Planning for an attack
What's UP Doc? Dr. Karl Anderson What's UP Doc? Dr. Karl Anderson

Planning for an attack

Question: I was diagnosed with acute intermittent porphyria about two years ago. I’m always worried about my next attack. What plan should I have in place in the event of another attack? At what point do you think I shouldn’t try to go it alone without help?

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