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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This study involved focus groups with porphyria patients to explore the emotional and psychological challenges they face. Participants discussed their lived experiences, shared coping strategies, and offered recommendations for additional support to improve their quality of life.
Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?
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.
Question: Can starting menopause make PCT worse/relapse? (because phlebotomies are a treatment and if you stop having periods maybe iron builds up?)
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?
