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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 ?
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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
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


