New Center for Rare Diseases at the UKE

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Center for the treatment of rare diseases established in Hamburg

A new center for the treatment of rare diseases was opened at the University Medical Center Hamburg-Eppendorf (UKE), "in which specialists from numerous clinics and institutes work together on an interdisciplinary basis," according to the latest UKE press release. A rare disease is only defined as such if a maximum of five out of 10,000 people suffer from it, but since more than 7,000 such diseases are known, the number of people affected is quite remarkable. The Federal Ministry of Health assumes that around four million people with a rare disease live in Germany.

"Due to the low frequency of individual diseases, the special nature of the rare diseases and the overall high number of patients, the care of those affected requires not only a national but an international approach," emphasized Professor Dr. Christian Gerloff, medical director of the clinic and polyclinic for neurology at UKE. The “University Center for Rare Diseases” in Hamburg will help to significantly improve patient care. "The main areas of treatment include congenital metabolic and vascular diseases as well as liver and kidney problems," reports the UKE. The Medical Director and CEO of the UKE, Professor Dr. Martin Zeitz explained that "structures for interdisciplinary cooperation" would be established in the center, which would help "that every highly specialized discipline will be even better in exchange with the other subjects."

Pooling expertise on rare diseases In the new treatment center, UKE will pool its "years of expertise in many areas of rare diseases" in order to provide those affected with the best possible care and to gain new insights into rare diseases. Comparable centers are currently emerging at around 20 locations in Germany and close cooperation should take place with them, explained Professor Dr. Dr. Uwe Koch-Gromus, Dean of the Faculty of Medicine and board member of UKE. "In addition, intensive cooperation with health authorities, payers, affected patients and their self-help groups and with scientific associations is planned," continued Koch-Gromus. In addition, the UKE strives for "close cooperation with the best European institutions in the research and treatment of rare diseases", added Professor Dr. Ansgar W. Lohse, Medical Director of the 1st Medical Clinic and Polyclinic at UKE.

Improving diagnostics, therapy and care The new treatment center for rare diseases in Hamburg initially consists of a higher-level control center and six specialized units based on existing UKE competencies. The six subunits will initially consist of a center for autoimmune liver diseases, one for congenital kidney diseases, one for vascular inflammation (cerebral vasculitis), one for metabolic disorders (lysosomal storage diseases), one for tumors of the central nervous system (neurofibromatosis) and a center for transgender developments. According to the UKE, another seven sub-centers are already in the assessment process. In the "University Center for Rare Diseases" the UKE physicians want to "research the causes and treatment options of rare diseases, improve the diagnosis, therapy and care of affected patients and support medical education and training in the field of rare diseases", explained Professor Dr . Kurt Ullrich, medical director of the clinic and polyclinic for pediatric and adolescent medicine.

National Action Plan on Rare Diseases It was only in August that the Federal Cabinet decided on an aid program for rare diseases. According to the Federal Ministry of Health, this so-called "National Action Plan for People with Rare Diseases" (NAMSE) comprises "a total of 52 measures to tackle the most pressing problems of those affected and their families." The decision sees, among other things, an improvement in information that medical care structures and a pooling of competencies. Research in the field of rare diseases is also to be intensified. Ultimately, it is a matter of enabling patients to be diagnosed more quickly and then receiving the necessary care, according to the ministry’s statement on the cabinet decision. So far, the rare diseases have often been linked to a real odyssey by the health system, because the symptoms are not only unknown to those affected, but also to the doctors. In addition, there is often a lack of knowledge about possible treatment approaches.

Although all rare diseases show an extremely low prevalence, are mostly chronic and often bring about a significant reduction in life expectancy, the commonalities usually end here. Overall, the rare diseases are "a very heterogeneous group of mostly complex clinical pictures," explains the Federal Ministry of Health. Appropriate care for those affected therefore requires a correspondingly broad range of treatment centers. Another important step has been taken here with the establishment of the University Center for Rare Diseases at the UKE. (fp)

Image: Andreas Dengs, /

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