Second Programme of Community action in the Field of Health 2008-2013
European Porphyria Network: providing better healthcare for patients and their families [APHP-EPNET_FY2012]
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme)since ...
Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme)since 2007. The objective is to establish an effective network of specialist porphyria centres throughout the EU. Currently, EPNET consists of 28 EU specialist centres from 17 European countries that work together to develop an up-to-date approach to the management of patients and families with porphyria that conforms to uniform standards. We also have members from Australia, New Zealand, South Africa and the USA.
Evidence from the last years 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). However, porphyria centres and/or clinical experts are still not present in all EU countries; therefore the care is not equal in all member states. An objective for 2012 will be to work with national plans, the laboratory network and the cross boundary directive to find a method to reach out to patients in countries currently outside EPNET e.g. Bulgaria, Greece, Portugal, Croatia and others.
EPNET focuses on: provision of information to patients (in their own languages) and healthcare professionals (HCPs); 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. Progress is communicated to partners through regular meetings and reports. Information on the porphyrias and drug selection is made available to patients, public health authorities and HCP`s at www.porphyria-europe.org; www.drugs-porphyria.org.
Start date: 01/01/2012 - End date: 01/01/2013
Call: Promote Health (Hp-2010)
Topic: Patients registries