EPNET, the European Porphyria Network
Porphyria Expert Clinical Centers (PECC)Beginning of 2021, because of an identified need, Epnet decided to create a transparent procedure to endorse porphyria clinical centers as “centers of expertise”, the Porphyria Expert Clinical Centers (PECC), alongside the traditional Epnet diagnostic centers.
Three types of centers were envisaged: cutaneous PECC, acute PECC and “full” PECC (covering cutaneous and acute). The criteria that were decided on, reflect experience (duration of clinical care for porphyria patients, but also the size of the cohort of patients that is followed), the presence of multidisciplinary care and continuity of care, the availability of the necessary diagnostic and treatment modalities for the different types of porphyria, contribution to scientific progress in the field of porphyria and the endorsement by the hospital management as well as by a relevant patient organisation. The procedure is overlooked by a newly created Epnet Working Group (PECC WG).
Several centers were endorsed meanwhile (see list of endorsed centers here).
The procedure remains open all year round; the PECC WG will evaluate candidacies at least twice a year. You can apply through the Surveymonkey questionnaire here: https://no.surveymonkey.com/r/EpnetPECC
The procedure and criteria for PECC application are available here.
What is EPNET ?
EPNET, the European Porphyria Network, is a a non-profit learned association (or scientific association), having its office in Bergen, Norway.
EPNET will promote fundamental and clinical research in the field of porphyrias, improve knowledge of the porphyrias and facilitate best practice in their treatment and diagnosis by accommodating and interconnecting expert activities across Europe in the service of porphyria patients.