New Center for Rare Diseases at UKE

Center for the treatment of rare diseases in Hamburg

03/10/2013

A new center for the treatment of rare diseases has been opened at the University Hospital Hamburg-Eppendorf (UKE), „Collaborate interdisciplinary in the specialist of numerous clinics and institutes“, so the current press release of the UKE. Although a rare disease is by definition only referred to 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 estimates that around four million people in Germany live with a rare disease.

„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 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 the care of patients. „The treatment focuses on congenital metabolic and vascular diseases as well as liver and kidney disorders“, reports the UKE. The Medical Director and CEO of UKE, Professor Martin Zeitz, explained that would be in the center „Structures for interdisciplinary cooperation“ established, which contributes, „that every highly specialized discipline gets even better in exchange with the other subjects.“

Pooling of expertise on rare diseases
In the new treatment center, the UKE will be his „Years of expertise in many areas of rare diseases“ to provide those affected with the best possible care and to gain new insights into the rare diseases. Comparable centers are currently being set up at around 20 locations in Germany, and they want to work closely with them, explained Professor Dr. med. Dr. Uwe Koch-Gromus, Dean of the Medical Faculty and board member of the UKE. „In addition, intensive cooperation with health authorities, payers, affected patients and their support groups and scientific societies is planned“, Koch-Gromus continues. In addition, strive for the UKE „Researching and treating rare diseases, working closely with the best European institutions“,added Professor dr. Ansgar W. Lohse, Medical Director of the 1st Medical Clinic and Polyclinic at the UKE.

Improvement of 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, which are based on existing competencies of the UKE. The six subunits are initially made up of a center for autoimmune liver disease, one for congenital kidney disease, one for vascular inflammation (cerebral vasculitis), one for metabolic disorders (lysosomal storage disorders), one for central nervous system tumors (neurofibromatosis) and one transgender development center. Another seven sub-centers are already in the review process, according to the UKE. In that „University Center for Rare Diseases“ want the doctors of the UKE „Researching the causes and treatment options of rare diseases, improving the diagnosis, treatment and care of affected patients and supporting medical education and training in the field of rare diseases“, explained Professor Kurt Ullrich, Medical Director of the Clinic and Polyclinic for Paediatrics and Youth Medicine.

National Action Plan on Rare Diseases
Only in August, the federal cabinet had decided on a help program for rare diseases. This so-called „National Action Plan for People with Rare Diseases“ (NAMSE) includes, according to the Federal Ministry of Health „ a total of 52 measures to tackle the most pressing issues for those affected and their relatives.“ Among other things, the decision provides for an improvement of information, medical care structures and pooling of competences. Also, the research in the field of rare diseases should be intensified. The ultimate goal is that patients can be diagnosed faster and then receive the necessary care, according to the ministry's communication on the Cabinet decision. So far, the rare diseases are often associated with a veritable odyssey through the health system, because not only the sufferer, but also the doctors are unknown symptoms. In addition, often lack the knowledge of possible treatment approaches.

Although all rare diseases show a very low prevalence, are usually chronic and often bring a significant reduction in life expectancy, but here ends usually have the similarities. Overall, the rare diseases „a very heterogeneous group of mostly complex diseases“, explains the Federal Ministry of Health. Adequate care for those affected therefore requires correspondingly broad treatment centers. Here is another important step in the establishment of the University Center for Rare Diseases at the UKE. (Fp)

Image: Andreas Dengs, www.photofreaks.ws