MIL OSI Translation. Region: Germany / Deutschland –
Source: Charite – Universitatsmedizin BerlinThe Charité – Universitätsmedizin Berlin and the biopharmaceutical company Alnylam establish the Amyloidosis Center Charité Berlin (ACCB) for the treatment of the metabolic disease amyloidosis. The aim is to provide the best possible, interdisciplinary care for amyloidosis patients, an estimated 50,000 people worldwide are affected by amyloidosis. Because the clinical picture is so complex and rare, it often goes undetected. Hereditary transthyretin (TTR) -mediated amyloidosis (hATTR) is an inherited, progressively debilitating and often fatal disease that is triggered by mutations in the so-called TTR gene. The TTR protein is mainly produced in the liver and is normally a transport protein for, among other things, vitamin A. Mutations in the TTR gene lead to the deposition of abnormal amyloid proteins. This can lead to damage to body organs and tissues, for example in the peripheral nerves and in the heart, which has corresponding consequences. Katrin Hahn, specialist in neurology at the Charité and spokesperson for the ACCB: “The establishment of the ACCB is an important step for amyloidosis patient care in Germany. The cooperation with Alnylam helps us to establish the Charité as a leading center for the treatment and research of amyloidosis. The prerequisite for this is strong networking with research and interdisciplinary collaboration between experts. Our goal is to treat patients suffering from this destructive disease in the best possible way and to establish the ACCB as a center of excellence in the long term. ”Through the cooperation, patients at the ACCB should benefit even more directly from new scientific findings and innovative patient management infrastructures. The cooperation also includes joint scientific studies and publications. In addition, the ACCB plans to organize specialist conferences and to set up an interdisciplinary database or register to continuously record and evaluate patient data. There are also plans to develop a patient-focused app and to organize training and awareness-raising events for patients, doctors and clinical institutions. With the help of these measures, the ACCB wants to ensure that amyloidosis patients are treated according to the current state of medicine and that therapeutic guidelines are continuously developed. Dr. Fabian Knebel, Senior Physician in Charge of Cardiology and Angiology at the Charité and spokesman for the ACCB: “So far, the care of amyloidosis patients in Germany has been organized very decentrally. There are only a few structures tailored to their needs. With the ACCB, we are bundling expertise in order to increasingly work together on the best outcome for amyloidosis patients. Be it in neurology, hematology, nephrology, gastroenterology, pain medicine, ophthalmology, surgery or even in cardiology – the best possible care for amyloidosis patients always offers a multidisciplinary approach. ”The starting point for treating the disease has changed in recent years further developed through new therapeutic possibilities. This also includes the RNA interference (RNAi) technology developed by Alnylam for the treatment of genetic amyloidosis. Hannes Schmeil, Managing Director of Alnylam Germany: “For Alnylam, it is an inspiring challenge that the Charité is building a center of excellence for treatment and support research into amyloidosis. Even today, amyloidosis is often only diagnosed at an advanced stage. This is often too late in the case of a disease that is very challenging to treat. Lately there has been great progress in the treatment of many rare and complex diseases, including ATTR hereditary amyloidosis. In order for patients to benefit from medical advances, care structures must keep pace with these developments. Specialized centers like the ACCB are the right approach. This is the only way to ensure that patients can benefit from medical progress. “
LinksMore information about ACCBhttps: //amyloidosis-center.charite.de/
ContactDr. Katrin HahnSpeaker of the ACCB Clinic for Neurology with Experimental NeurologyCharité – Universitätsmedizin BerlinT: +49 30 450 660 049katrin.hahn (at) charite.deProf. Dr. Fabian Knebel Spokesman of the ACCB Medical Clinic m.S. Cardiology and AngiologyCampus Charité MitteCharité – Universitätsmedizin BerlinT: +49 30 450 513 143fabian.knebel (at) charite.de
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EDITOR’S NOTE: This article is a translation. Apologies should the grammar and / or sentence structure not be perfect.