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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Live: Acute Porphyrias Bonus Questions
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.
Live: Cutaneous Porphyrias Bonus Questions
Dr. Bruce Wang answers the questions about cutaneous 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
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
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.
Global Porphyria Day: Live 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 is now available.
Dr. Wang, Live: 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.