A Porphyria Center of Expertise is an established medical center with porphyria expert physicians or researchers as well as diagnostic or research laboratory personnel. The Center personnel have significant expertise and experience in the diagnosis, management and treatment of the eight major Porphyrias and their variants. Such centers render clinical and/or laboratory services to porphyria patients that is free of political or other influences and that meets the following requirements:

• A Center has a Director or Co-Director who is an APEX Expert Member and/or Associate Expert Member, and appropriate support staff

• Capability to provide comprehensive diagnostic, management and treatment services to patients with all eight major porphyrias and their variants.

• An active clinical and/or basic laboratory research organization investigating the porphyrias and or heme biosynthesis is optional.

• The Center will have educational programs and opportunities for young fellows and faculty to develop expertise in the porphyrias and/or heme biosynthesis.

• The Center may participate in clinical trials for the diagnosis and treatment of the porphyrias or to monitor clinical effectiveness of various drugs or therapeutic regimes.

Porphyria Centers of Expertise

Click on a center to learn more about their research, associated porphyria experts and more.