Network Management and Dissemination

To be able to cope with the organizational demands of this multicentre project the project office is hosted by the department of the coordinator Dr. Heiko Reutter (Bonn). Besides the daily office interests in co-ordination of network activities, the network office is in charge of contacts and information passing on to all network partners, contacts to patient organizations, physicians, laymen and media, as well as the organization of network meetings and the international conference scheduled for 2011 for the respective medical societies and patients. More to the point of network co-ordination the network office is considerably responsible for the direct recruitment of patients and families and the input of data into the central patient register.

Network Speaker

Prof. Dr. rer. nat. Bernhard Herrmann
Max-Planck-Institut für molekulare Genetik
Abt. Entwicklungsgenetik
Ihnestr. 63-73, 14195 Berlin

Coordinators