American Porphyrias Expert Collaborative

APEX, the American Porphyrias Expert Collaborative, is a collaborative organization dedicated to advancing research and understanding of porphyrias and heme biosynthesis. It supports fundamental, translational, and clinical research while promoting awareness and knowledge among physicians, researchers, and scientists. Through national coordination and international collaboration, APEX works to encourage innovation and high standards of care for people affected by these disorders.

Its programs include the Porphyrias Consortium, a nationwide network of 14 specialized Porphyria Centers of Expertise, and the Western Hemisphere Network, which connects healthcare providers across North, Central, and South America. APEX also organizes the biennial International Porphyrias Symposium and offers research grants. Resources for health professionals include information on testing and diagnosis, detailed guides to porphyria disorders, drug safety for acute hepatic porphyrias, and the opportunity to consult with a porphyria expert. For patients and researchers, the organization provides information about porphyria centers, research studies, and publications. APEX also shares educational information about porphyria types, symptoms, and causes.