Skip to main content

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
USA
+1 (407) 284—1234

Comments

Popular posts from this blog

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!