Center for Rare Diseases was opened

Center for Rare Diseases (ZSE- Tübingen) has been opened: The University Hospital Tübingen and the Eberhard Karls University Tübingen have founded the nation's first Center for Rare Diseases (ZSE-Tübingen). The aim should be to treat people with rare diseases early on indiscriminately.

Background of the initiative "Center for Rare Diseases" is because many rare diseases are not detected in time in the daily family practice. The sufferers often have a year-long medical odyssey behind them, without ever getting a precise diagnosis let alone therapeutic help.

Rare diseases are defined by their occurrence. When less than 2000 people are affected. There are an estimated three to four million patients in Germany with one of these rare diseases. Many of them unrecognized. The most common cause of rare diseases is the genetic material of those affected. They can also be passed on to subsequent generations.

The University Hospital Tübingen has a large number of specialist centers that allow a specific diagnosis and possible treatment. Because for many of these rare diseases there is little to no treatment option due to the low number of cases. In ZSE Tübingen, of course, work will continue on research into the cause and therapy of these rare diseases.

Collaboration should continue to build with patient and patient groups to ensure the widest possible support to those affected and their families.

In medical circles there are always louder voices calling for more centers like the one in Tübingen and criticizing the abolition of polyclinics in East Germany after the fall of the Wall. After all, trends in medicine are moving away from individual practices: in Germany, more and more so-called medical care centers (MVZ) are being set up, which are based on the model of the former polyclinics. Here different disciplines work together under one roof.

Prof. Dr. Olaf Riess, the Medical Director of Medical Genetics at the University Hospital Tübingen and at the same time the spokesman of the new center, commented: "With this new structure, our goal is to point the way for the founding of further centers in Germany."

Should it go after the media and public attention for their project, the Tubingen are already well started: For the opening appeared the wife of the Federal President, Eva Luise Köhler. She is the patron of the Alliance of Chronic Rare Diseases (AXIS) and spoke the greeting, in which she also assessed the founding as a departure.

It remains to be hoped for the ZSE-Tübingen and the patients affected by rare diseases that there will be further support in the medical and political field for the idea, so that those affected receive fast and specific help in the future. (Thorsten Fischer, Naturopath Osteopathy, 23. 01. 2010)

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Overview of diseases