Additional Resources

Continuing Medical Education (CME) 

 

It’s our pleasure to invite you to an important symposium on the Recent Advances in Heme Biosynthesis and the Porphyrias, the eight major inborn errors of heme biosynthesis. This three day symposium will focus on the most recent findings on the molecular biology and regulation of heme biosynthesis and the clinical features, pathophysiology, and current treatment of the acute hepatic and erythropoietic porphyrias. Day 1 will be devoted to the clinical aspects and current treatments of each Porphyria. Days 2 and 3 will focus on the latest research findings on heme biosynthesis and emerging molecular-based treatments for the porphyrias. Also, there will be a special session for patients on the latest advances in the Porphyrias.

The Symposium offers up to 25.5 CME Credits. The Registration fee includes meals and the poster reception. Orlando has an international airport and outstanding attractions such as Disney World and Universal Studios. The hotel rates are attractive ($133/night plus tax, single or double), with parking, Internet, and resort fees included. The room rate is available for three days after the symposium, on a first come basis. 

We look forward to seeing you there!

Register Now!

 

Telemedicine Consultations

If you need to consult with a Porphyria specialist and are unable to do so because of the distance to a Porphyria center, you now have the opportunity to consult electronically.

A Porphyria specialist and member of the APF Scientific Advisory Board, Dr. Karl Anderson, will be consulting with Porphyria patients via a telemedicine service from the General Clinical Research Center of the University of Texas Medical Branch at Galveston.

To access this service, you need to first locate a video teleconferencing facility in your community. These facilities are often found in libraries, businesses, universities and research centers. Unfortunately, neither the APF nor Dr. Anderson can provide you with a list of facilities with teleconferencing capabilities. Next, call Dr. Karl Anderson (409) 772-4661 to arrange for an appointment and to find out what information you might need to have ready prior to the telemedicine visit.

During the teleconference, Dr. Anderson will discuss your case with you just as he would during a regular office visit. This project was funded in part by a grant from the American Porphyria Foundation.

 

Physician Information Kit Available

Upon request, the APF will send a comprehensive physician education packet on the acute porphyrias to physicians. It includes educational materials on the diagnosis and management of the acute porphyrias; information on biochemical and genetic testing; Panhematin treatment for the acute porphyrias; and a recent article from the Annals of Internal Medicine on diagnosis and management of the acute porphyrias.  Please call our office at 713-266-9617 to order the kit.

In addition, the APF will also send information on PCT and EPP to physicians upon request. Please call our office at 713-266-9617 to order the packet.

These packets are delivered via USPS, for physicians only.

 

Porphyria Slide Set

An Essential Resource and Teaching Tool

This PowerPoint slide set provides valuable information about porphyria, including discussion covering porphyria types, causes, diagnosis, and treatment protocols. It also includes vital information focusing on Panhematin® (hemin for injection).

Download here