New center for rare diseases in Ulm



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New Center for Rare Diseases established at Ulm University Hospital

People with a rare disease such as ALS usually have a long path to suffering until a corresponding diagnosis is made and therapies are initiated. The newly founded Center for Rare Diseases at Ulm University Hospital is to develop into a network for diagnostics, therapy and research in the future.

Rare diseases are highly complex and often show unspecific symptoms. Most of the time, sufferers complain about nonspecific symptoms and therefore have an odyssey from doctor's office to doctor's office before they are diagnosed with a rare disease. "The person affected feels left alone," said Eva Luise Köhler at the ceremony to establish the Center for Rare Diseases (ZSE). The wife of the ex-Federal President is the patron of the Alliance for Chronic Rare Diseases (Axis) and wishes those affected that the ZSE should creates the necessary structures to make a reliable diagnosis for patients earlier and initiate suitable therapies, which is crucial to counteract late effects, reports Professor Frank Lehmann-Horn, director of the Institute of Applied Physiology at the University of Ulm and driving force at the ZSE A center for diagnostics, therapy and research is to be established at the center and will become a contact point for those affected and doctors.

Due to the complexity of rare diseases, the ZSE works in an interdisciplinary manner. The data from Ulm experts are to be evaluated here and appropriate treatments initiated. According to Lehmann-Horn, other centers in the country would also be contacted if the expertise in Ulm was not sufficient. Rare diseases have long been researched at Ulm University Medicine. "This has a long tradition in Ulm and is our real field," said Professor Klaus-Michael Debatin, Vice President of the university. Federal Research Minister Annette Schavan was also confident that a long neglected topic such as rare diseases will now be tackled. Because especially the rare diseases "need a lot of time and understanding," says Lehmann-Horn.

Online platform for rare diseases Rare diseases are still largely neglected in conventional medicine. The pharmaceutical industry is reluctant to invest in intensive research in the field of rare diseases, since the small number of patients means that no economic benefit can be expected. In order to offer those affected the opportunity to exchange knowledge and experience, employees of the Chair for Information Systems at the Friedrich Alexander University in Erlangen-Nuremberg founded an "online platform for rare diseases" last year. Around four million people in the Federal Republic suffer from a rare disease that has hardly been researched so far. (ag)

Read on:
Platform for rare diseases founded
Rare diseases: Inform doctors
Rare Disease Center opened
Center for rare diseases was opened
Platform for rare diseases

Image: Gerd Altmann / pixelio.de

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Video: You Are Not Alone - Introducing the Center for Rare Disease Therapy


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