Eurosarcoidosis voted in as member of EU sarcoidosis platform

Woerden, Netherlands, 20 February 2024 – On the occasion of the Annual Board Meeting of ERN-LUNG in Frankfurt on 19 February 2024, Eurosarcoidosis, the European Sarcoidosis Foundation, has been admitted by a unanimous vote to the Sarcoidosis Core Network as a supporting partner. Eurosarcoidosis, incorporated in 2020, is dedicated to creating a fund for European sarcoidosis research.

The Sarcoidosis Core Network (SCN) is a European platform in which a variety of members, such as medical doctors, researchers and representatives of patient advocacy groups, coordinate their efforts in the area of sarcoidosis. The SCN, chaired by prof dr Francesco Bonella (Ruhrlandklinkik Essen and Duisburg University Hospital), falls within the remit of ERN-LUNG, the main European platform for diffuse pulmonary disorders.

ERNs or European Reference Networks have been instituted by medical specialism as part of a rare diseases policy officially adopted by the European Union. In ERNs expertise is pooled which may not be available to the same extent in all twenty-seven member states. Only medical doctors from Rare Disease Centres of Excellence, certified by member states under a shared EU framework of guidelines, are eligible to become full members of these reference networks. For patients with uncommon disease manifestations medical doctors from other clinics may consult in virtual meetings with a team of ERN specialists. As a result, most of these patients do not have to engage in long-distance travel to obtain the best possible diagnosis and expert advice for their treatment and care close to home.

Sarcoidosis or Besnier Boeck disease is a rare and disabling chronic inflammatory disorder with no known cause and no cure. Nodules of inflammatory cells, called granulomas, may interfere with the proper functioning of any organ or tissue in the human body. Fatigue is a hallmark of the disease, which may continue even after inflammatory activity itself has abated. Mortality, mostly due to pulmonary and cardiac complications, ranges between six and eight per cent.

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