Siggelkow, Heide, Kornak, Uwe, Oheim, Ralf, Barvencik, Florian, Semler, Oliver, Obermayer-Pietsch, Barbara, Jakob, Franz, Seefried, Lothar, Hofmann, Christine, Lehmann, Gabriele, Jundt, Gernot, Brenner, Rolf, Meier, Christian, Gluer, Claus C. and Grasemann, Corinna (2020). Founding of the German speaking Network for Rare Bone Diseases NetsOs - through an Initiative of the German Society of Osteology (DGO). Osteologie, 29 (4). S. 259 - 266. STUTTGART: GEORG THIEME VERLAG KG. ISSN 2567-5818
Full text not available from this repository.Abstract
A significant proportion of rare diseases affect the musculoskeletal system. Due to growing disease awareness, increasingly individualized medicine and the availability of new innovative drugs an expanding need for expert knowledge and networking in the field of rare osteological diseases has arisen. In Europe, the European Reference Networks (ERN) were established in 2017 to address these tasks in a patient centered way. In the same year the German Society for Osteology (DGO) started an initiative to synergize and develop existing activities in the field of Rare Bone Diseases in German-speaking countries. As a result, the Network on Rare Osteopathologies (NetsOs) was founded in November 2018 with specialists from a wide range of disciplines from Germany, Austria and Switzerland. NetsOs encompasses both, an expert-network with clinical and scientific experts from Austria, Germany and Switzerland as well as an expert-center based network in Germany. The latter connects clinical centers with special expertise, so-called B-centers, for rare osteological diseases. NetsOs aims to improve and support diagnostic procedures, lifelong care and monitoring for patients who are affected by a rare bone and mineral condition together with the patient associations. Additional focus lies on training and education in the field of rare osteological diseases. In order to achieve these goals, members of the network are involved in clinical care, clinical and basic research and teaching for rare bone and skeletal diseases and are available for consutls for colleagues. Involvement in national, European and international clinical and scientific networking, interaction with centers for rare diseases, scientific societies, ERNs and European registers is established through the involvement of the members of NetsOs in these structures.
| Item Type: | Journal Article | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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| URN: | urn:nbn:de:hbz:38-313185 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| DOI: | 10.1055/a-1245-7248 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Journal or Publication Title: | Osteologie | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Volume: | 29 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Number: | 4 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Page Range: | S. 259 - 266 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Date: | 2020 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Publisher: | GEORG THIEME VERLAG KG | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Place of Publication: | STUTTGART | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ISSN: | 2567-5818 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Language: | German | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Faculty: | Unspecified | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Divisions: | Unspecified | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Subjects: | no entry | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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| URI: | http://kups.ub.uni-koeln.de/id/eprint/31318 |
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