Each rare disease is per definition infrequent but because of their huge number rare diseases in total are frequent. This results in a lack of experience for a specific disease by physicians although rare diseases are a common challenge in clinical practice. Because of the limited knowledge many patients with rare diseases remain without a correct diagnosis and specific treatment for a long time. The German training program for residents is not prepared to convey expertise in rare disease. The neurological curriculum needs new concepts to generate knowledge and provide strategies for the broad spectrum of rare neurological diseases. The centers for rare diseases that have recently been founded at many university hospitals and the national action plan for individuals with rare diseases (NAMSE) that has been launched recently by the German ministries of health, education and research (BMG and BMBF) provide ideal starting points for such a development. An academy for rare neurological disease will be constituted this year. Registries for rare disease are essential tools for the set-up of representative cohorts as well as for the promotion of research and the development of novel therapeutic approaches. This all requires an adequate reimbursement for the complex and interdisciplinary care required for patients with rare diseases.
Research Areas and Centers
- Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)