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Additional Medical Information

Additional Medical Information

The APF promotes treating your health with the respect it deserves, by looking to reliable sources for your medical information. The experts on our Scientific Advisory Board advise patients to rely on sites like the Centers for Disease Control (CDC), the National Institutes of Health (NIH), the APF website and others backed by scientific research. The resources below are all good places to start.
University of Capetown Porphyria Center
University of Queensland Porphyria Research Unit
European Porphyria Initiative
Annals of Internal Medicine
Merck Manual of Diagnosis and Therapy — Remember that diagnosing Porphyria requires the proper lab tests, but Merck is another good source of treatment information.
U.S. Food & Drug Administration
General Health information from NIH
MedlinePlus from NIH
Genetics Home Reference from NIH
Medical Dictionaries
We suggest the dictionaries listed below as a good place to start if you need help understanding some of the medical terminology on this website.

Porphyria Dictionary from the University of Cape Town Porphyria Center
Merriam-Webster Medical Dictionary
Genetics Glossary from NIH

Please take a moment to research this information and incorporate into your medical information for your Doctors, they are sure to appreciate this information as great resources.

Remember....Research is the key to your cure!


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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: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…