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. Please call the APF office at 301-347-7166 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 (link to brochures in store), 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.