Rare Disease Center opened



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Berliner Charité: Center for Rare Diseases opened

The Center for Rare Diseases was opened at the Berlin Charité on Monday. As the fifth facility of its kind in Germany, a treatment center in Berlin is now explicitly devoted to rare diseases.

Rare diseases (orphan diseases) is a collective term for all diseases under which, according to the EU definition, less than one in 2,000 people (less than 5 in 10,000 people) suffer. Due to the small number of patients with the corresponding diseases, there are often significant structural problems in patient care, diagnosis and treatment for rare diseases. In order to remedy these grievances, the Center for Rare Diseases was opened at the Berlin Charité on the official European Day of Rare Diseases (February 28, 2011).

Rare diseases mostly chronic life-threatening diseases
According to the "Allianz Chronic Rare Diseases" and other self-help organizations, rare diseases are mostly life-threatening, chronic diseases that affect multiple organ systems and urgently require interdisciplinary treatment approaches to ensure adequate medical care for patients. According to the experts, a large part of the rare diseases (around 80 percent) is caused by genetic causes. In the new center for rare diseases "modern methods of genome analysis (...) will help diagnose rare diseases better and faster", explained the director of the Institute for Medical Genetics and Human Genetics at the Charité, Stefan Mundlos. The combination of diagnostic and clinical expertise, as well as more intensive advice to local doctors, will help to resolve the structural problems in patient care in the future. For the time being, the new center at the Charité in Berlin will focus more on rare diseases in childhood and adolescence, but will increasingly focus on the care of adult patients in the future.

Special centers offer interdisciplinary care
In addition to the special centers for rare diseases in Freiburg, Tübingen, Frankfurt (Main) and Bonn, a corresponding institution at the Berlin Charité is now devoting itself to interdisciplinary diagnosis, therapy and research on rare diseases. The director of the Institute for Medical Genetics and Human Genetics emphasized that especially affected children and their parents will in future be spared the odyssey from specialist to specialist, some of which will take years. The center should also be the contact for specialists and pediatricians with information needs and act as an interface between practice and basic research. Despite the opening of five special centers for rare diseases and the planned opening of another facility in Heidelberg, the problem of insufficient research funding has not yet been resolved, emphasized Charité Dean Annette Grüters-Kieslich. On the occasion of the International Day of Rare Diseases, the Eva Luise and Horst Köhler Foundation, for example, once again supported research into rare diseases with its research prize of 50,000 euros, but according to the dean of the Charité, there is still a lot of catching up to do.

Research deficit in the field of rare diseases
Not only are the lack of diagnostic and treatment standards for rare diseases extremely difficult, but also the lack of research interest. Because the pharmaceutical companies make little efforts to develop new drugs and therapies due to the low sales opportunities in the field of rare diseases. In total, more than four million people suffer from rare diseases in Germany alone (around 30 million across Europe), but the number of patients for each individual disease is extremely small. The range here ranges from one per 2,000 inhabitants to one per hundred thousand. For example, compared to the so-called common diseases, the corresponding preparations can hardly make money and the research interest of pharmaceutical companies is correspondingly low. For this reason, some states and the EU have already enacted regulations and laws that are intended to improve research in the field of rare diseases. For example, pharmaceutical companies that develop new drugs for the treatment of rare diseases in the EU and the United States are being given easier access to their approval and marketing. (fp)

Read on this topic:
Rare diseases: Inform doctors
Center for rare diseases opened

Image: Gerd Altmann / pixelio.de

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