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This section of the website includes more detailed information about the three most common types of Porphyria: AIP (and the clinically similar HCP, VP & ADP), EPP and PCT. For more general information, please see the About Porphyria section of the site. A more in depth discussion of diagnostic issues in the porphyrias can be found in the Testing and Treatment section of our website.
You will also find one free, online Continuing Medical Education course on the acute porphyrias, and a Powerpoint presentation on the porphyrias. You may also call our office to order a copy of our free physician education packet.
Isitaip.com is another outstanding resource for helping in the diagnosing of the Acute Porphyrias.
Clinicians and researchers specializing in Porphyria are available to consult on suspected or confirmed cases of Porphyria, and to discuss the individual course of treatment. Some specialists can assist with diagnostic testing, and some are available for clinical consultation with patients. There is one telemedicine facility for Porphyria consultation in the country, at the University of Texas-Medical branch, in Galveston.
Please call the APF office at 713-266-9617 for information on contacting the specialist who can best answer your concerns.
The APF encourages you to let Porphyria patients know about our organization and our programs. We publish educational brochures, written by Porphyria experts for a lay audience, and a quarterly newsletter in addition to this website. We also offer members a national support network, which for some people provides the first-in-a-lifetime opportunity to speak with someone who shares their diagnosis.
**Diagnostic Testing for the Acute Porphyrias - Clarification of Testing Results**
Important Update - Click to view