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Rare diseases – coordination of expertise in Baden-Württemberg

The goal of the first Germany-wide Coordination Workshop on Rare Diseases is to advance the coordination of the treatment of and research into rare diseases in Baden-Württemberg. The workshop, to be held in Tübingen on 9th July, will bring together experts from the universities of Freiburg, Heidelberg, Mannheim, Tübingen and Ulm.

Diseases are considered rare if less than 5 out of 10,000 people suffer from a particular disease. Although a doctor hardly ever treats more than one patient with a particular rare disease during his professional lifetime, the total number of rare diseases is nevertheless quite high since between 6,000 and 8,000 rare diseases are known. This represents a huge challenge in terms of health policy. Nevertheless, thanks to the specialists of the universities of Freiburg, Heidelberg, Mannheim, Tübingen and Ulm, Baden-Württemberg is home to a high quantitative and qualitative expertise on rare diseases.

Baden-Württemberg takes on a pioneering role in "rare diseases"

The first Germany-wide Coordination Workshop on Rare Diseases, to which the Tübingen Centre for Treatment and Research into Rare Diseases has invited other university centres in Baden-Württemberg, has the objective of coordinating expertise on rare diseases. In cooperation with the Baden-Württemberg Ministry of Science, Research and the Arts, the Baden-Württemberg centres are seeking to develop a concept for the establishment of a network that brings together all the Baden-Württemberg centres for rare diseases. The concept envisages mapping all the expertise in this field in Baden-Württemberg, establishing an informative homepage, establishing a contact and coordination office as well providing information to doctors, patient associations and other interested people in Baden-Württemberg. "With the establishment of such a network, Baden-Württemberg will take on a pioneering role in the field of rare diseases in Germany," highlighted Prof. Olaf Riess, spokesperson of the Tübingen Centre for Treatment and Research into Rare Diseases.

It is envisaged that the close coordination of experts from all Baden-Württemberg centres focusing on rare diseases will lead to the improvement of the treatment of and research into rare diseases in Baden-Württemberg. Doctors and scientists in the network also hope that the coordination and publication of such expertise on rare diseases will also contribute to promoting specialisation in specific rare diseases. However, the coordination project requires additional financial support, in particular for the provision of information to patients and doctors. "The positive feedback from the Ministry of Science, Research and the Arts shows us that politicians are increasingly aware of the problem of rare diseases. This raises hope that we will soon be able to start an information campaign in Baden-Württemberg," said Dr. Holm Graessner, Managing Director of the Centre for Treatment and Research into Rare Diseases in Tübingen.

Further information:
University Hospital Tübingen
Centre for Treatment and Research into Rare Diseases (ZSE)
Dr. Holm Graessner, Managing Director
Calwerstr. 7, 72076 Tübingen
Tel.: +49 (0)7071/29-7 22 85

Website address: https://www.gesundheitsindustrie-bw.de/en/article/press-release/rare-diseases-coordination-of-expertise-in-baden-wuerttemberg