Thursday, December 28, 2017
Patient Day In Orlando Florida ~ Its Free!
Patient Day In Orlando Florida ~
Complimentary Parking & A Full Day of learning about the Porphyrias, Meeting Experts & Q&A session
Meet other patients and caregivers!
Saturday January 13, 2018
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
What is δ-Aminolevulinic Acid Dehydratase Porphyria (ADP)? ADP is more severe than the other acute porphyrias and can present in childhoo...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
Emergency Room Guidelines for Acute Porphyrias These Emergency Room Guidelines (download PDF) cover essential information for the emer...