The European Porphyria Network (Epnet) is an organisation that aims to improve the quality of life for people suffering from porphyria diseases. The organisation works to collect and share information about these rare conditions, as well as to promote research and raise awareness of porphyria diseases at a European level.
Epnet serves as a platform for collaboration between patients, healthcare professionals and researchers. Through the network, members can exchange experiences and resources, which contributes to a better understanding of the diseases and their treatment. The organisation also participates in various projects and initiatives to support research and development in the field.
By collecting information and experiences from different countries, Epnet helps to create a stronger community for those affected by porphyria diseases. This can help to strengthen patients' rights and improve access to treatment and support.