New center for rare diseases in Ulm

New center for rare diseases founded at the University of Ulm

06/22/2012

People with a rare condition such as ALS usually have a long ordeal behind them until a diagnosis is made and therapies are initiated. The newly founded Center for Rare Diseases at the University of Ulm is to develop into a network for diagnostics, therapy and research.

Rare diseases are highly complex and often show nonspecific symptoms
Most sufferers complain about nonspecific symptoms and therefore have an odyssey from doctor's office to doctor's office behind them before they receive the diagnosis of a rare disease. „The affected person feels left alone, "said Eva Luise Köhler at the ceremony to found the Center for Rare Diseases (ZSE) .The wife of the ex-President is patron of the Alliance of Chronic Rare Diseases (Axis) and wishes those affected that the ZSE the necessary In order to provide patients with a reliable diagnosis and to initiate suitable therapies, it is crucial to counteract long-term consequences, reports Professor Frank Lehmann-Horn, Director of the Institute of Applied Physiology at the University of Ulm and the driving force behind the ZSE should create a network for diagnostics, therapy and research and become a contact point for those affected and doctors.

The ZSE works on an interdisciplinary basis due to the complexity of rare diseases. Here, the data from Ulm experts are evaluated and appropriate treatments are initiated. According to Lehmann-Horn, other centers in the country would be contacted, if the expertise in Ulm is not sufficient. Rare diseases have long been researched at Ulm University Medicine. „This has a long tradition in Ulm and is our genuine field, "said Professor Klaus-Michael Debatin, vice-president of the university.Also Federal Research Minister Annette Schavan was confident that now a long-neglected topic such as the rare diseases will be addressed especially the rare diseases „It takes a lot of time and understanding, "says Lehmann-Horn.

Online platform for rare diseases
Rare diseases are still severely neglected in conventional medicine. The pharmaceutical industry is reluctant to invest in intensive research in the field of rare diseases, as there are no economic benefits to be expected due to the low number of patients. In order to provide interested parties with the opportunity to exchange knowledge and experience, employees of the Chair of Business Informatics at the Friedrich Alexander University in Erlangen-Nuremberg founded one last year „Online platform for rare diseases“. Around four million people in Germany suffer from a rare and previously poorly-studied disease. (Ag)

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Picture: Gerd Altmann