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Norwegian Porphyria Centre


Address

Haukeland University Hospital
Postboks 7804
Bergen, NO-5021 Norway

Phone

4755973050

Fax

4755973115

Email Address

porfyri@helse-bergen.no

Description

The not-for-profit Norwegian Porphyria Centre (NAPOS) is located at Haukeland University Hospital in Bergen. NAPOS was established in 1999 by The Norwegian Ministry of Health and Social Affairs and is working for improved diagnostics, treatment and prophylaxis of patients with porphyria. The work of NAPOS includes: counseling and professional support to health personnel; clinical, biochemical and genetic diagnostics; pre-diagnostic counseling to potential carriers of porphyria (before genetic testing); the establishment of a national database of patients with porphyria; the construction and maintainance of a Nordic database of safe and unsafe drugs for porphyria patients; quality assurance of diagnostic and monitoring methods using external quality control; and support of porphyria research. Porphyria is a group of at least eight metabolic disorders that arise as a result of a malfunction in one of the eight steps in the body’s synthesis of a complex molecule called heme. Heme is essential for the transport of oxygen to cells in the body. If any step in the synthesis of heme is blocked, an intermediate chemical accumulates in the cell, resulting in oxygen depletion. Those intermediate chemicals, known as porphyrins or porphyrin precursors, are the substances of which heme is composed.

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