European Porphyria Initiative

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; and to provide information and support to families affected by porphyria; and to support and encourage medical research.

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, has been undertaken by a steering group including several UK specialist consultants.

They can be contacted at www.porphyria-europe.com