Norway

City: 

Bergen

Name of Centre: 

Norwegian Porphyria Centre (NAPOS)

Full address: 

Haukeland University Hospital
Department of Medical Biochemistry and Pharmacology
Post Office​ Box 1400
NO-5021 Bergen
Norway

Email: 

porfyri@helse-berremovegen.no

Website: 
Tel: 

+47 55 97 31 70

Director: 

Professor Sverre Sandberg

Email: 

porfyri@helse-berremovegen.no

Tel: 

+47 55 97 31 70

Activities: 

The Norwegian Porphyria Centre (NAPOS) is located at Helse Bergen HF, Haukeland University Hospital (HUS) in Bergen, Norway. NAPOS is the national service for porphyria patients in Norway and offers a broad range of services. This includes specialised laboratory services (advanced biochemical and genetic diagnostic tests), guidelines on diagnosis, treatment and follow-up, clinical advice for individual patients, specialised drug information service, genetic and lifestyle counselling and aid when applying for benefits and other social services. NAPOS hosts the Norwegian Porphyria Registry, a national medical quality registry, and the European Porphyria Registry (EPR). NAPOS provides extensive information for both patients and healthcare professionals at www.napos.no, sending out frequent newsletters with updates and relevant information. Yearly training courses for healthcare professionals, patients and their families are offered. NAPOS runs the EPNET External Quality Assessment Scheme for porphyrias, which aims to improve diagnostic testing quality and has participation from 37 specialist porphyria laboratories worldwide, and the Drug Database for Acute Porphyria (www.drugs-porphyria.org). NAPOS is also a member of the European Reference Network for Hereditary Metabolic Disorders (MetabERN).