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About EPI What is EPI ? Print this page  Print


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.

Why was EPI formed ?

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.

Cape Town 2005

EPI steering group

Mike Badminton, University Hospital of Wales, UK

Jean-Charles Deybach, Louis-Mourier, France

George Elder, University Hospital of Wales, UK

Jorge Frank, Universitätsklinikum Aachen, Germany

Pauline Harper, Karolinska Universitetssjukhuset, Sweden

Pavel Martasek, Univerzita Karlova v Praze, Czech Republic

Elisabeth Minder, Stadtspital Triemli, Switzerland

Hervé Puy, Centre Hospitalier Universitaire Ambroise Paré, France

Sverre Sandberg, Haukeland Sykehus, Norway

Stig Thunell, Karolinska Universitetssjukhuset, Sweden

This website has been independently reviewed by experts from outside Europe.

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