Initiatives that stand up
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National Action Alliance for People with Rare Diseases (NAMSE).
NAMSE is a coordination and communication body founded in 2010 by the German Federal Ministry of Health (BMG) together with the Federal Ministry of Education and Research (BMBF) and the Alliance of Chronic Rare Diseases (ACHSE e. V.) to initiate better care for patients with rare diseases. In 2013, the 28 alliance partners presented a "National Action Plan" consisting of a total of 52 individual measures. One of its priority elements is the establishment of a nationwide network of centers for rare diseases (CRDs). As central contact points for patients with unclear and rare diagnoses, reference centers ("type A centers") are to be established at university hospitals, further small "type B centers" will be affiliated. 

Centers for rare diseases ("type A centers") have now been established at around 30 university hospitals. However, the implementation of the entire package of measures has repeatedly stalled in the past, as the alliance partners had to struggle for a long time over questions of funding and quality assurance of the CSEs. 
To Namse

Health care research and networks

Logo von Translate-Namse
In the care of patients with rare diseases, specialists must collaborate across locations and disciplines due to the often small number of cases. As part of the TRANSLATE-NAMSE project funded by the Innovation Fund of the G-BA, a consortium of university hospitals tested the networking of its centers for rare diseases from 2017 to 2021 by implementing several measures envisaged in the National Action Plan. The scientific evaluation accompanying the project shows that cross-site cooperation has significantly shortened diagnostic paths. TRANSLATE-NAMSE could thus pave the way for the adoption of urgently needed high-throughput diagnostics and case conferences in standard care. Patients with previously uncertain diagnoses can hope for genetic evidence of disease causes and more precise treatment options.

The successful collaboration of consortium partners, which are particularly strong in pediatric research, within the framework of TRANSLATE-NAMSE has become the starting point for the development of the integrated care and research network Alliance4Rare.
Final Report T-NAMSE
Patients who present to a Center for Rare Diseases (ZSE) because of a suspected rare disease often suffer from complex symptoms. Quite often the symptoms are accompanied or even caused by psychiatric-psychosomatic diseases. This further complicates the diagnosis.

With the ZSE-DUO project, the participating ZSEs, led by the Center for Rare Diseases Würzburg, want to find out whether the situation can be improved by a new form of care. As part of the project, a dual pilot structure is being introduced in eleven ZSEs throughout Germany. Therefore a specialist for psychiatric-psychosomatic diseases accompanies the clarification of the complaints from the beginning and on a permanent basis in addition to specialists for physical complaints.

The introduction of the new pilot system is intended to enable the correct diagnoses to be made more frequently and more quickly in centers for rare diseases, so that more people can receive suitable therapy earlier. This benefits patients and saves costs.
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