Additional Resources

Click on the bold blue text below or on a topic listed on the left side of the page to read more.

Patients and families dealing with Porphyria may find the following websites, and the non-Porphyria related medical information in this section, useful.

Social Security Disability Benefits

Healthwell Foundation For those who have health insurance, assistance with medical copayments and insurance premiums for acute porphyria treatment (like Panhematin®) is available to eligible patients. To determine eligibility and apply online, visit:

Fun for Children with EPP & CEP

Mercy Medical Flight


* EPP patients: Dr. Micheline M. Mathews-Roth writes that "the risks from surgical lights, anesthetics and drugs are great enough that all EPP patients should wear Medic Alert bracelets, even those who have mild enough cases that they can lead quite normal lives with just a few adjustments." Please click here for more information.

* Acute porphyria patients: Wearing a Medic Alert bracelet is advisable for patients who have had attacks but is probably not warranted in most latent cases. Please click here for more information.