CME and Additional Resources

Continuing Medical Education (CME)

Please visit this area again soon for upcoming CME opportunities.

The Recent Advances in Heme Biosynthesis and the Porphyrias, the eight major inborn errors of heme biosynthesis symposium, was held in January of 2018. This important three-day symposium focused 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 was devoted to the clinical aspects and current treatments of each Porphyria. Days 2 and 3 focused on the latest research findings on heme biosynthesis and emerging molecular-based treatments for the porphyrias. Also, there was a special session for patients on the latest advances in the Porphyrias. The Symposium offered up to 25.5 CME Credits.

Register Here

Heme Biosynthesis and the Porphyrias 2021: Consensus Diagnoses, Variant Disorders, New & Emerging Therapies”, to be held October 15-17, 2021 at the Hyatt Regency Schaumburg near the Chicago O’Hare Airport. This 2.5-day educational symposium will feature international and national experts who will present on the latest findings on the biology, transport, and regulation of heme biosynthesis; as well as the clinical features, management, and current and emerging treatments for the acute hepatic and erythropoietic porphyrias. The symposium offers up to 25 CME credits.

In addition to the scientific program, there will be two special sessions: A workshop for diagnostic laboratory directors focused on the development of consensus guidelines for biochemical diagnostic testing, monitoring, and results reporting for each of the acute and erythropoietic porphyrias, as well as for genetic testing including the introduction of a validated pathogenic variant database for each porphyria. The goal of this workshop is for diagnostic laboratories to provide improved guidance to physicians, so they order the proper biochemical and genetic diagnostic tests for each porphyria. The second special session will be a patient meeting where physician experts will cover the diagnosis, management, and treatment of the porphyrias and will provide an opportunity for patients to “Ask the Experts."

 

Heme Biosynthesis

 

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 (301) 347-7166 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 (301) 347-7166 to order the packet.

These packets are delivered via USPS, for physicians only.

Porphyria Slide Set

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