Further funding until 2029: Over one million euros for the Central German Competence Network for Rare Diseases
Over the next four years, Saxony-Anhalt will be funding the Central German Competence Network for Rare Diseases (MKSE). The Ministry of Health is providing around €250,000 per year. Since 2013, the network coordinated by Magdeburg University Hospital has been offering a central point of contact for those affected and their families. In close cooperation with Halle University Hospital and Dessau Municipal Hospital, the MKSE is making a significant contribution to improving diagnostics, care, and research in the field of rare diseases.
Health Minister Petra Grimm-Benne praises the valuable work: “The MKSE is invaluable for those affected and their families. With funding over the next four years, we will continue to expand this important contact and coordination center. I would like to thank everyone involved at all three clinics for their close cooperation and for pooling their expertise. Patients benefit from the fastest and most effective diagnostics and care possible, and thus also from a better quality of life.”
Dr. Katharina Schubert, Medical Director and Coordinator of the Magdeburg Center for Rare Diseases at Magdeburg University Hospital, who represents the Magdeburg site together with Prof. Martin Zenker as site spokesperson and Director of the Institute of Human Genetics at Otto von Guericke University Magdeburg, emphasizes: “We welcome the special support from the state government of Saxony-Anhalt and are grateful for the trust placed in us. We look forward to working together to improve care for people with rare diseases in the long term and to further develop the structures in the state.”
“Rare diseases often manifest themselves in childhood and adolescence. The state government's support for the Central German Competence Network for Rare Diseases is a decisive step toward ensuring that people of all ages affected by these diseases receive the best possible, future-oriented care in our region,” says Prof. Dr. Simone Hettmer, Director of the University Clinic and Polyclinic for Pediatrics I at Halle University Medical Center, who represents the Rare Diseases Department at Halle University Hospital (Saale) together with Prof. Dr. Dr. Walter A. Wohlgemuth, Director of the University Clinic and Polyclinic for Radiology.
Prof. Dr. med. Christoph U. Herborn, Medical Director of the Municipal Hospital Dessau: "Rare diseases place particularly high demands on medical care, as expertise, diagnostics, and therapy are often concentrated in different locations. The MKSE enables us to bring this expertise together in a targeted manner and make it available to patients in the state. The funding strengthens reliable care pathways, shortens diagnostic processes, and improves coordination between outpatient and inpatient treatment—a decisive benefit for clinical practice, medical research, and those affected alike."
Background
Of the approximately 30,000 known diseases worldwide, 5,000 to 8,000 are considered rare. An estimated 100,000 people in Saxony-Anhalt live with a rare disease or suspected rare disease. A disease is considered rare in the European Union if it affects no more than 5 in 10,000 people. All information about the Central German Competence Network for Rare Diseases can be found on the website.
 H_Ko - stock.adobe(1).jpg "Grafik Seltene Erkrankungen - (c) H_Ko - stock.adobe")
Symbolic photo Rare diseases - (c) H_Ko - stock.adobe.com