At the initiative of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, the nationwide recognition process for specialist centers (NAMSE Type B) is starting. This consistently implements a key measure of the National Action Plan for People with Rare Diseases, further expanding the quality-assured care structure.
The classification into NAMSE Type A and Type B centers is based on the National Action Plan for People with Rare Diseases, which established binding structural criteria for quality-assured care in 2013. NAMSE Type A centers have already been designated through a structured recognition and certification process for the past five years. These centers serve primarily as key contact points for people with undiagnosed conditions, while NAMSE Type B centers provide care for patients with an established diagnosis. Experts, mainly at university medical centers, offer specialized consultations, interdisciplinary case conferences, and often cross-sector care structures. Especially for very rare and particularly complex diseases, they pool clinical experience and scientific expertise, ensuring continuous care.
“Rare diseases are complex, but the path to proper care shouldn’t be. That is precisely why we are providing reliable guidance with the recognition of specialized centers,” explains Prof. Dr. Med. Corinna Grasemann, Director of the Department of Pediatrics and Adolescent Medicine at University Medical Center Mainz, Chair of the Certification Commission and Chair of NAMSE-Netz e.V. The association supports the implementation and development of the care structures defined in the National Action Plan, in particular the quality-assured recognition and networking of centers for rare diseases in Germany.
Recognition Based on Agreed Quality Criteria with Patient Involvement
The recognition process now being launched is based on quality criteria coordinated through the National Action Alliance for People with Rare Diseases. It creates transparency regarding existing expertise and ensures that designated centers meet defined structural, technical, and organizational requirements. A key element of the process is the active participation of patients. In close cooperation with the Alliance for Chronic Rare Diseases ACHSE e.V., patient perspectives are systematically incorporated into the evaluation. Thus, quality is defined not only structurally but also from the perspective of those receiving care. In addition to individual care, the recognition process also serves the structural further development of the network of specialized facilities. Recognized centers can collaborate more closely, jointly discussing and treating particularly complex cases.
Networking Strengthens Quality and Care Security
“By recognizing specialist expert centers, we are laying the foundation for a nationwide network of specialized expertise. Especially for very rare and complex diseases, it is essential to systematically share knowledge, pool experience, and further develop treatment strategies together,” emphasizes Prof. Dr. Annette Grüters-Kieslich, Deputy Chair of NAMSE-Netz e.V. and Chair of the Board of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases.
With the recognition process for NAMSE Type B centers, the landscape of care for people with rare diseases is becoming ever more professional. Transparent quality criteria, structured networking, and the involvement of patients increase trust in specialized care and help ensure that expertise reaches those who need it most.
Background
Why specialized centers for rare diseases are important
In Germany, more than four million people live with a rare disease. A disease is considered rare if no more than five out of 10,000 people are affected. In total, there are several thousand different disease patterns known. Many are chronic, complex, and require interdisciplinary, highly specialized care. Because of non-specific symptoms and a lack of experience in everyday care, it often takes years to achieve the correct diagnosis. Visible, quality-assured, and networked centers help consolidate expertise, shorten diagnostic pathways, and ensure continuous care.
Contacts
Prof. Dr. Corinna Grasemann
Chair of the Certification Commission and Chair of NAMSE-Netz e.V.
Prof. Dr. Annette Grüters-Kieslich
Deputy Chair of NAMSE-Netz e.V. and Chair of the Board of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases
Further information
