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The functions of the coordinating centre include the coordination of all network activities, contacts and distribution of information to all network partners, the organization of network meetings, data capture into the central patient data base, contacts to patient organizations, medical professionals, lay people and the media. Efficient communication is an important goal and, therefore, the coordination centre is available 24 hours a day, via telephone answering machine, fax or e-mail. The coordinating centre will collaborate with project 2 “Information technology” by managing internet communication platforms and the EB data base. Intensive collaboration with other networks for rare diseases will lead to durable structures for management of rare diseases in Germany.
Prof. Dr. med. Leena Bruckner-Tuderman
Universitätsklinikum Freiburg
Universitäts-Hautklinik
Hauptstr. 7
D-79104 Freiburg
E-mail: leena.bruckner-tuderman@uniklinik-freiburg.de
