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Think Tank for Rare Diseases

What are the needs in the field of rare diseases? How can something be done quickly to improve care and research? Whose support must be secured in order to get new initiatives off the ground? The Think Tank of the Eva Luise and Horst Köhler Foundation discusses and develops project ideas and initiates their implementation so that those affected by rare diseases can look forward to a better future.

andrea katheder, for ELHKS, Berlin 2021

Think Thank for Rare Diseases

As a cross-institutional “think tank”, the Rare Diseases Think Tank promotes agenda setting in the field of rare diseases in order to generate timely attention for relevant topics in the political context. The well-being of patients serves as the guiding principle for all discussions and recommendations for action.

The informal committee of the Eva Luise and Horst Köhler Foundation works complementarily 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 committee members undertake not to allow any commercial interests to enter into the exchange based on trust.

Operational costs are borne by the industry partners involved in the think tank.

The following individuals are currently involved in the think tank:

Prof. Dr. Christopher Baum (Berlin Institute of Health)
Dr. Alexandra Berger (UK Frankfurt)
Prof. Dr. Reinhard Berner
(Universitätsklinikum Dresden)
Dr. Frank Bohnenstengel
(Chiesi GmbH)
Prof. Dr. Hildegard Büning
(Medizinische Hochschule Hannover)
Prof. Dr. Jutta Gärtner
(Universitätsklinikum Göttingen)
Jens Göbel
(Universitätsklinikum Frankfurt)
Dr. Anja Lachmann
(Takeda Pharma Vertrieb GmbH & Co. KG )
Prof. Dr. Thomas Meitinger (Technische Universität München)
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 Tübingen)
Dr. Josef Schepers
(Berlin Institute of Health)
Susanne Riedel
(Pfizer GmbH)
Prof. Dr. Ute Scholl
(Berlin Institute of Health)
Prof. Dr. Holger Storf
(Medical Informatics Group am UK Frankfurt)

and the Eva Luise and Horst Köhler Foundation:

Prof. Dr. Annette Grüters-Kieslich
Sanna Börgel
Dr. Julia Fleck
Dr. Franziska Krause
Eva Thull

Guests are invited as needed.

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