FOR SUPPORT, CALL 1-866-APF-3635 (273-3635)
AURORA study designed to evaluate bitopertin as a potential disease-modifying treatment for adults with EPP in the United States.
Aurora study designed to assess changes in protoporphyrin IX levels, safety, tolerability, photosensitivity and other measures in a double-blind, placebo-controlled setting; SEE https://www.discmedicine.com/news/disc-medicine-initiates-aurora-a-phase-2-clinical-study-of-bitopertin-in-adults-with-erythropoietic-protoporphyria-epp/
The APF welcomes media attention to these fascinating and troubling diseases. If you are a member of the media, we hope you will use the information you find on our site in your stories, and we ask that you credit the American Porphyria Foundation as your source. We encourage you to share our website address, www.porphyriafoundation.org, and our toll-free telephone number, 1-866-APF-3635, with your audience as well.
Different types of porphyria (and its misdiagnoses) have been featured on Discovery Health's Mystery Diagnosis, and on dramas like House, CSI, and ER. Patient stories have been covered in publications ranging from Ladies' Home Journal to online sports news outlets. There are works of popular fiction and non-fiction about porphyria, notably Isabel Allende's memoir, Paula, written while the author’s daughter lay in a coma brought on by an acute attack.
Even for some of the best minds in medicine, porphyria can be a puzzle. When porphyria is unrecognized, patients are often given medications that worsen their condition, undergo multiple unnecessary and dangerous surgeries, or suffer permanent skin damage, severe liver disease or other complications that could be avoided if the disease were better recognized. Due to these complications, we welcome media attention that gives accurate information about our group of rare disease.
Please contact our office for a complete listing of print, radio and television features and enjoy the media made available on this website.
