Additional Resources

Medical Resources and Dictionaries

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 reliable places to visit.

• University of Capetown Porphyria Center
• 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.
• PubMed
• U.S. Food & Drug Administration
• General Health information from NIH
• MedlinePlus from NIH
• Genetics Home Reference from NIH

We suggest the dictionary listed below as a good place to start if you need help understanding some of the medical terminology on this website.

• Genetics Glossary from NIH

Medic Alert Bracelets

Medic Alert bracelets are strongly recommended for both Cutaneous and Acute Porphyrias. Please contact the APF if you would like help on wording to include on your medical bracelet.

Here is one company option: https://www.medicalert.org/

Lock Screens

• Acute Screen Lock
• VP Screen Lock
• CEP Screen Lock
• HCP Screen Lock
• AIP Screen Lock
• EPP Screen Lock
• PCT Screen Lock

Angel Flight

Angel Flight is a group whose members provide free transportation for patients in need and perform other missions of community service. They help arrange free, non-emergency transportation for patients who require medical treatment but who cannot afford to pay for a commercial flight. Transportation is provided by volunteer pilots, often using their own private general aviation aircraft. http://www.angelflightsoars.org/