The cross-institutional Think Tank drives agenda setting in the field of rare diseases in order to gain attention for relevant topics in the political context. The well-being of patients is the guiding principle for all discussions and recommendations for action. The informal panel of the Eva Luise and Horst Köhler Foundation works complementary to existing institutional structures such as the National Action Alliance for People with Rare Diseases (NAMSE). All participants act on an equal footing and contribute their expertise to the think tank free of charge. The members of the panel commit themselves not to allow any economic interests to enter into the trusting exchange. The operating costs are borne by the industrial partners participating in the think tank. The following are currently involved in the think tank Prof. Dr. Christopher Baum (Berlin Institute of Health) Prof. Dr. Reinhard Berner (Universitätsklinikum Dresden) Prof. Dr. Hildegard Büning (Medizinische Hochschule Hannover) Prof. Dr. Jutta Gärtner (Universitätsklinikum Göttingen) Jens Göbel (Universitätsklinikum Frankfurt) Katrin Moser-Schirr (Takeda Pharma Vertrieb GmbH & Co. KG ) Prof. Dr. Martin Mücke (RWTH Aachen) Dr. Christine Mundlos (Achse e.V.) Prof. Dr. Friedemann Paul (Charité - Universitätsmedizin Berlin) Prof. Dr. Fabian Prasser (Charité - Universitätsmedizin Berlin) Prof. Dr. Hendrik Rosewich (Universitätsklinikum Göttingen) Dr. Josef Schepers (Berlin Institute of Health) Nicole Schlautmann (Pfizer GmbH) Prof. Dr. Ute Scholl (Berlin Institute of Health) Prof. Dr. Holger Storf (Medical Informatics Group am UK Frankfurt)

and on the part of the Eva Luise and Horst Köhler Foundation Prof. Dr. Annette Grüters-Kieslich Dr. Franziska Krause Sanna Börgel Eva Thull Guests are invited as needed