WHAT IS EPI ?

The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria, focusing in particular on the prevention and treatment of acute attacks, to provide information and support to families affected by porphyria, and to support and encourage medical research.

Porphyrias are uncommon diseases for which diagnosis and treatment varies in individual countries. EPI was formed in order to compare experience between countries, attempt to develop a common approach to the management of these diseases and to facilitate international collaborative clinical research and development. The first phase of the project, of which this website is part, has been undertaken by a steering group.