European Porphyria NetworkIt has been decided to set up a network of specialist porphyria laboratories in which there will be collaboration and a quality assurance scheme. All laboratories listed on this website should fulfill the following criteria: Able to distinguish, using biochemical testing, between all types of porphyria Able to offer specialist detailed interpretation of results with […]
The information on these web pages provides guidance based on the available evidence. However this evidence is not always complete, which may lead to some degree of uncertainty. It must be made clear that the prescription of drugs to a patient with acute porphyria is entirely at the responsibility of the physician in charge. European […]
Drugs considered safe for use in the acute porphyrias in alphabetical order This list is based on information from publications, other drug lists and clinical data reported to porphyria centres. Inclusion of a drug does not guarantee that it will be safe in all circumstances. If your drug is on this list it is considered […]
General anaesthesia may be safely undertaken in patients with an acute porphyria (Acute Intermittent Porphyria, Variegate Porphyria or Hereditary Coproporphyria) providing care is taken to select anaesthetic agents that are known to be safe. In those patients in whom it is necessary to proceed with anaesthesia before a definitive diagnosis is made it is best […]
Porphyria Information Resources on the WWW This information is not a complete list of resources. It is intended as a starting point for those interested in finding more information. Porphyria consortium Website:http://www.rarediseasesnetwork.org/porphyrias/ Rare connect Website:https://www.rareconnect.org/ Australia : Porphyria Association Inc The Nerve Centre, 54 Railway Road, Blackburn, VIC, 3130, Australia Tel.: +61 […]
About EPI DISCLAIMER Print Confidentiality Confidentiality of data relating to individual patients and visitors to the EPNET Web site, including their identity, is respected by this Web site. The Web site owners undertake to honour or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site […]
I have recently had an acute attack of porphyria, is it safe for me to go on holiday abroad ? There is always a risk. The risk may vary on how active your disease is and where you are going on holiday. It is advisable to contact the specialist centre closest to your holiday destination, […]
The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria, focusing in particular on the prevention and treatment of acute attacks, to provide information and support to families affected by porphyria, and to support and encourage medical research. Why was EPI formed ? Porphyrias […]
The EPNET mission is to improve lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU DG for health & consumers since 2007. We have established an effective network of specialist porphyria centres throughout the EU. Currently, EPNET consists of 33 EU specialist […]
Drugs and porphyria Selecting a drug Print SELECTING A DRUG We recommend to first check your drug. SAFE LIST