WHAT IS EPNET ?

The European Porphyria NETwork (EPNET) has been funded by the European Commission through its Publich Health and Consumer Protection Directorate (DG SANCO), PHEA programme. The aim of EPNET is to set up a functional network of specialist porphyria centres, each conforming to agreed quality criteria.

EPNET will draw up consensus-agreed information about all porphyrias, translate it into patients’ languages; standardize the evidence-base for advice about drug use in the porphyrias; monitor the performance of specialist diagnostic services by external quality assessment; collect epidemiological data for public health national and EU authorities. Information will be made available through a website dedicated to porphyria and links to European information networks on rare diseases
The project is broken down into 7 work packages and 14 deliverable.