The European Porphyria Network - Epnet

Epnet is 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. More information about Epnet can be found on

NAPOS runs the Epnet External Quality Assessment Scheme (Epnet EQAS) and the European Porphyria Registry (EPR).

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The European Porphyria Network - Epnet


The Epnet External Quality Assessment Scheme (Epnet EQAS) covers analytical, postanalytical and clinical aspects for all porphyria-related biochemical analyses.

The Epnet EQAS includes one shipment per year, consisting of two sets of biological materials for porphyria analysis and corresponding feedback reports. Distributed biological samples may vary, but at least one set consist of fresh frozen urine, faeces, plasma, whole blood and pellet of red blood cells from an actual patient. The samples are sent in February stored in dry ice (as far as possible) and will be delivered by express service to the participating laboratories.

The two sample sets are to be analysed in February and in September. The sample sets are accompanied by clinical case histories and should be analysed in the routine procedures for all porphyrin analyses available at the laboratories.

Participants are asked to report the results of their analyses and a diagnosis based on these. The feedback report consists of a detailed report comparing the participating laboratory’s results with anonymized results from other laboratories, as well as advice on methods of measurements and diagnostic procedures.

Apply for participation:

If you are interested in participating in Epnet EQAS, please send an email to Please report which porphyria-related analyses you perform in your laboratory, and, if applicable, which analyses you would forward to other laboratories. It would then also be of interest to know which laboratory/ies you forward samples to.

Download a feedback report example:
Epnet EQAS 2018 Feedback report example.pdf

European Porphyria Registry (EPR) 

The European Porphyria Registry (EPR) is a multi-centre, international, observational prospective cohort study, so far including patients with acute intermittent porphyria (AIP).

Objectives of the European Porphyria Registry

The EPR aims primarily to conduct an investigation of the natural history, efficacy of treatment regimens and actual clinical practice for people with porphyria across Europe. It also aims to improve quality of care and serve research.

Recruitment of participants

EPR participants are recruited by the European Porphyria Network’s (Epnet) porphyria centres of expertise or by physicians with a special interest in porphyria. Participants were recruited when their diagnosis was established (symptomatic or as part of predictive testing), for treatment and for follow-up.

Data for AIP patients was collected until 2019 during regular and emergency visits to the hospital or primary health care. The registry recorded data such as gender, date of birth, porphyria diagnosis, laboratory test results, symptoms and treatment. Physicians were able to enter consecutive visits for the same participant.

Confidentiality and data protection

Information included in the registry is anonymous (i.e. each record will have a personal pseudonym/code), so that nobody, except the treating clinician can identify the participant. Data stored in the registry is transmitted via a secured encrypted internet system, so that nobody else using the internet can gain access to it.

The registry is located at Haukeland University Hospital, Bergen, and originally has a license from the Norwegian Data Inspectorate in accordance with the EU Data Protection Directive (reference no. 12/00657-3/1UR). From 20.07.2018 the registry is operated in accordance with the new Norwegian Personal Data Act and the EU General Data Protection Regulation (GDPR).

In addition to the data protection, porphyria centres of expertise are required to obtain national and/or local ethical committee approval. All members of Epnet have signed a strict confidentiality agreement concerning access and the publication of data.


Approval by an EPR Steering Committee will be required, as well as local ethical approval for the specific research project when relevant.
For further information, please contact us at


The development of the EPR has been funded by NAPOS, Bergen, Norway and the Directorate General for Health & Consumers (DG SANCO), Brussels, Belgium.

Contact information

How to get to the hospital

​There are several ways of getting to Haukeland University Hospital by public transport. Here follows a brief summary.

​​​​​​​The term Pasientreiser (patient travel) is used to describe travel to and from authorised treatments. The hospital is responsible for providing patient travel and will meet the cost of the cheapest mode of travel on behalf of the patient. You can read more on the Pasientreiser website​. The website also contains information about the Helseekspress and Helsebuss bus services.

Several scheduled bus routes stop at the hospital. There is also a number of commuter bus routes running between different parts of Bergen and the hospital.
Skyss has produced a dedicated route map for Haukeland University Hospital (PDF)​ showing which bus routes stop at the hospital. At you will find complete bus routes with details of stops and departure times.
Tide and Nettbuss operate express coaches on several long-distance routes to the centre of Bergen.

Bybanen light railway
The closest Bybanen station is Kronstad. Walking from Kronstad to the hospital takes around 10 minutes. Timetables are available at

There are usually taxis available at the taxi rank outside the main hospital building (Sentralblokka). If not, our receptionists are on hand 24 hours a day and can help book a taxi for you.

Bergen Train Station in the centre of Bergen is the closest mainline station to Haukeland University Hospital. The distance between the station and the hospital is around 2.5 km and is served by several bus routes.

Bergen Airport in Flesland is just under 20 km from Haukeland University Hospital. There is no direct airport bus between Haukeland and Bergen Airport, but you can take the airport bus to and from the centre of Bergen.

Waiting areas
There is a separate waiting area near the reception in the main hospital building (Sentralblokka) for patients and next-of-kin waiting for transport.


​Parking facilities at Haukeland are divided into separate zones in and around the hospital grounds.
Parking spaces are very limited, however. Out of consid​​eration for those who need to travel to the hospital using their own car, we strongly urge those who are able to do so to use public transport​.

Read more about parking

Practical information

Food and catering


The patient library allows patients and their next-of-kin to borrow books, DVDs and periodicals.

We have a large selection of books, comic books, audiobooks, digital books/cards and PlayStation, Wii and Xbox games, as well as DVDs, CDs, periodicals, newspapers and music.
We also lend DAB radios and playback equipment for films, audiobooks and music.

Opening hours
Monday, Wednesday and Friday 11.30–15.30.
​Tuesday and Thursday 11.30–17.30.

Book trolleys
Every Monday, Tuesday and Thursday we visit the departments with our book trolley. If you would like to borrow something but are unable to make it to the library, feel free to contact us during opening hours, and we will deliver the requested material to you.

Computers and printers
The library has a public computer and printer/photocopier. Patients and next-of-kin are welcome to use the internet, do their online banking, print off plane tickets etc.

Visual art
We also lend visual art. Please contact us for more information.

Visiting times

​Ordinary hospital visiting hours are between 17.00 and 20.00. Most departments are also able to welcome visitors outside these times. We ask that visitors show consideration for other patients by going to the day room, for example.

If a patient is too ill to leave the room, we kindly ask that you arrange any visits outside normal visiting hours with the staff in the department in advance.

Wireless Internett

All patients and visitors can use free wireless internet in most areas of the hospital. is a wireless network for visitors, patients and staff.

How to connect to our guest network:

  1. Connect to the wireless guest network (
  2. A browser should open automatically. (If the login window does not appear, try to open the browser manually).
  3. Read the terms carefully.
  4. Press "Accept" when you have read and understood the terms.

The login takes place automatically on units after the first login, as long as the account is active. It will only be necessary to log in once per unit per 31 days.

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