National action plan for people with rare diseases (NAMSE)
4 million people are affected with rare diseases in the Federal Republic of Germany amongst which 1 million are children. The early and precise diagnosis stands as a prerequisite for cause-oriented treatment rather than symptomatic treatment of the disease which would help prevent serious disease manifestations as well as avoid unnecessary diagnostic measures and the associated stress on the patients.
The project NAMSE facilitates networking of treatment information from specialized institutions with practicing physicians involved in the treatment, thereby enhancing the quality of inter-disciplinary diagnosis. This would further enable significant improvements in the prevention, diagnosis and therapy of rare diseases on the lines of quality-oriented care.