Porphyria Medical Centers

Finding a Specialist and/or the Right Doctor

The American Porphyria Foundation promotes comprehensive care necessary for treating individuals with porphyria. One way in which we do this is by putting patients and their doctors in touch with specialists, laboratories and Porphyria Medical Centers that provide the highest level of knowledge to treat porphyria. Porphyria Medical Centers, commonly referred to as centers of excellence, are located in cities across the United States. The specialists at these centers have been treating patients with porphyria for decades and are highly published in the field.

In comparison to more well known diseases, physicians with expertise in porphyria are fewer in number and are scattered around the US. Oftentimes this makes locating a knowledgeable doctor in your city improbable, if not impossible.

If this is the case and you have a diagnosis of porphyria, consider one or a combination of options:

1. Physician Consultations—If your primary care physician does not feel comfortable managing your care, ask your doctor to consult with a specialist at a Porphyria Medical Center. This may help your physician understand your symptoms as they relate to porphyria and explore the treatment options best suited for you.

2. Seek Treatment at a Porphyria Medical Center—If your doctor is unable to manage your care, the APF can draw from a list of Porphyria Medical Centers and their specialists. Each center of excellence varies from institution to institution. Therefore, if you contact these centers, you should make a personal inquiry as to the nature, scope and availability of their services.

3. In Person One-Time Consultation with a Porphyria Expert—Meet with a specialist at a Porphyria Medical Center and bring the recommendation from your consultation with the specialist to your primary care physician at home.

4. Contact Physicians Interested in the Field of Porphyria—Some physicians not on our expert list are new to the field and have expressed an interest in learning more through mutual collaboration and by treating porphyria patients. Many patients who do not have a physician and cannot travel to a center of excellence have considered this as an option.

For those who need a diagnosis, you may also obtain a consultation and/or a diagnosis at several of these Porphyria Medical Centers. You may be asked to send your blood, urine, and stool samples for evaluation.

Regardless of your situation, it is best to establish a good relationship with a doctor in your area. Developing a relationship with a primary care physician takes time and can be frustrating, particularly when you have difficulty even locating a doctor willing to manage your care. One goal is finding a doctor who is willing to talk with you, accept recommendations from a porphyria expert and review information about porphyria from the APF.

Please contact the APF if you would like to find a specialist and Porphyria Medical Center nearest you.

If you would like to read about supporting programs to ensure the quality of specialists in the field of porphyria, please see our Protect Our Future campaign information.

The APF does not certify, recommend or warrant the quality of care provided by any of the institutions. THE LISTING IS A DIRECTORY AND NOT A REFERRAL SERVICE.