WHAT IS EPNET ?

EPNET’s mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme) from 2007-2010 and through the DG SANCO operating grant programme in 2011. The objective is to provide an effective network of specialist porphyria centres in each country. EPNET contains 28 EU specialist centres that work together to develop an up-to-date approach to the management of patients and families with porphyria that conforms to uniform standards. EPNET focuses on: provision of information to patients (in their own languages) and healthcare professionals (HCPs); collection of information on safety of drugs; use of external quality assessment to develop quality standards for diagnosis and clinical advice; a web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning. Progress is communicated to partners through regular meetings and reports.

The European Porphyria Network (EPNET) is a network of expert porphyria centres providing specialist testing and clinical advice on all porphyrias. EPNET has expanded from 20 to 32 members in 21 countries (including 4 associate members from outside of Europe) (link to “specialist centres”). Members are expected to liaise with their national scientific and patient networks, enter data into the patient registry, and collect information about drugs. All network members constitute the board. The board meets at least once a year. The board defines the overall strategy. It is chaired by the coordinator of the host organisation APHP (Assistance Publique Hopitaux de Paris).