Chair
David Cassiman
Metabolic Centre Leuven, Belgium
Members
Vicky McGuire
Scottish cutaneous Porphyria Service, Dundee, UK
Pauline Harper
Karolinska University Hospital, Stockholm, Sweden
Maria Domenica Cappellini
Rare Disease Center, Milan, Italy
Giovanna Graziadei
Rare Disease Center, Milan, Italy
Chantal de Jong - Peltenburg
Erasmus MC, University Medical Center Rotterdam, The Netherlands
Liz Gill
British Porphyria Association (BPA), UK
Beginning of 2021, because of an identified need, Ipnet decided to create a transparent procedure to endorse porphyria clinical centers as “centers of expertise”, the Porphyria Expert Clinical Centers (PECC), alongside the traditional Ipnet 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 Ipnet 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 available here.
The procedure and criteria for PECC application are available here.
