Background

Mastocytosis is a rare disease characterized by abnormal growth and accumulation of tissue mast cells (MC) in one or more organ systems. Based on the rarity of the disease it seems reasonable to establish a Network of Centers and Experts in Europe, the ECNM.

Europe has a long-lasting and vivid tradition in mastocytosis and mast cell research. This tradition is highlighted by the large number of interested scientists and experts, and the many research articles and overview articles on mastocytosis that have been prepared and published by European experts. The first comprehensive proposal to classify mastocytosis was also worked out by a European team of researchers (Karl Lennert and colleagues, Germany).    

During the past 15 years, European scientists and clinicians working in the field of mastocytosis have started to cooperate closely in their projects, in order to develop disease-related criteria. This cooperation was then extended to the US and other non-European countries and resulted in the formulation of robust disease-related criteria and an updated Consensus Classification of mastocytosis which was refined, discussed, and finally approved in the Year 2000 Working Conference on Mastocytosis in Vienna. The Classification was adopted by the WHO in 2001. In 2002, five European groups started the ECNM with the ultimate goal to improve recognition, diagnosis and therapy in mastocytosis and to provide all relevant available information about the disease to patients and doctors.