Canadian Association for Porphyria


WHAT IS EPNET ? 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 centres from 21 European and candidate countries that work together to develop an up-to-date consensus based approach to the management of patients and families with porphyria conforming to uniform standards. We also have associate members from Australia, Brazil, New Zealand, South Africa and the USA. Evidence from the last years programme shows that this network and its activities have a positive effect on the quality of diagnosis, number of patients diagnosed and treatment choices (shown through the collection of data, enquiries to the drug database and external quality scheme).

EPNET focuses on:

  • Provision of information to patients (in their own languages) and healthcare professionals;
  • Use of external quality assessment to develop quality standards for diagnosis and clinical advice;
  • A web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning;
  • Dissemination of information on safety of drugs.

Medical Disclaimer

Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only and is not meant to substitute consultation from a recognized health professional. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case.

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