Contact UPA at 800-868-1292 or info@porphyria.org
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’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?
What is the Porphyrias Consortium? Why is it so important? What do they do?
What are enzymes and why they are important in the porphyrias?
Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?
Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?
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?
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.
