About Us

Our Mission Statement

The Porphyria Alliance is a 501(c)3 nonprofit organization dedicated to making sure that no one with porphyria is left behind by increasing awareness, advancing testing and treatment, and promoting research for porphyria.

Legal Statement

The Porphyria Alliance is a nonprofit public benefit corporation and is not organized for the private gain of any person. It is organized under the Nonprofit Public Benefit Corporation Law for charitable purposes. A further description of the corporation's purposes includes, but is not limited to, the following: to increase awareness of porphyria among the public, and among patients being treated for the disease, as well as the medical community. Our goal is to improve the speed of diagnosis of porphyria; to assist individuals in locating laboratories that test for porphyria; to assist in making better testing more readily available; to encourage companies that offer medications to treat porphyria, or provide testing for porphyria to diagnose porphyria, to maintain reasonable prices; and to respect and help those who are suffering from porphyria.