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Patient Day In Orlando Florida ~ Its Free!

Patient Day In Orlando Florida ~
Its Free!
Complimentary Parking & A Full Day of learning about the Porphyrias, Meeting Experts & Q&A session
Meet other patients and caregivers!
Saturday January 13, 2018
Patient Day
10:00 am Welcome– D. Lyon-Howe, American Porphyria Foundation
10:05 am American Porphyria Foundation Overview
Session 1- Heme Biosynthesis & the Erythropoietic Porphyrias
Co-Chairs: E. Minder, MD & S. Keel, MD
10:15 am Heme Biosynthesis and the Porphyrias 101– J.D. Phillips, PhD
10:45 am Genetics 101– H. Naik, MS, CGC
11:00 am Erythropoietic Porphyrias Overview– M. Balwani, MD, MS
11:30 am EPP Research– J. Marcero
11:45 am Effective & Emerging Therapies for the Treatment of Erythropoietic Porphyrias– E. Minder, MD, MS
12:15 pm Q & A moderated by Co-Chairs
12:45 pm Lunch
Session 2- the Acute Hepatic Porphyrias
Co-Chairs: D.M. Bissell, MD & C. Levy, MD
1:45 pm Diagnosis of the Porphyrias– M. Badminton, MBChB, PhD
2:15 pm Acute Hepatic Porphyrias Overview– D.M. Bissell, MD
2:45 pm Caregivers and Support– Sandra Boone
2:45 pm Current & Emerging Treatments– B. Wang, MD
3:30 pm Research Overview and Patient Perspective– TBD and Sharon Dill, Patient Representative
3:45 pm Q & A moderated by Co-Chairs
4:30 pm Closing remarks– American Porphyria Foundation
Hyatt Regency Orlando
9801 International Drive
Orlando, Florida 32819
+1 (407) 284—1234


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The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…