European Reference Networks: challenges and opportunities
| العنوان: | European Reference Networks: challenges and opportunities |
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| المؤلفون: | Irene M.J. Mathijssen, Helene Dollfus, Maurizio Scarpa, Birute Tumiene, Jean-Yves Blay, Holm Graessner, Alberto M. Pereira, Franz Schaefer, Nicoline Hoogerbrugge |
| المساهمون: | Plastic and Reconstructive Surgery and Hand Surgery |
| المصدر: | Journal of Community Genetics Journal of Community Genetics, 12(2), 217-229. SPRINGER HEIDELBERG Journal of Community Genetics, 12(2), 217-229. Springer-Verlag Journal of Community Genetics, 12, 217-229 Journal of Community Genetics, 12, 2, pp. 217-229 |
| بيانات النشر: | Springer Berlin Heidelberg, 2021. |
| سنة النشر: | 2021 |
| مصطلحات موضوعية: | 0303 health sciences, Economic growth, Epidemiology, business.industry, Corporate governance, 030305 genetics & heredity, Public Health, Environmental and Occupational Health, Constructive, 03 medical and health sciences, Digital ecosystem, Original Arrticle, 0302 clinical medicine, SDG 3 - Good Health and Well-being, Brexit, Software deployment, 030220 oncology & carcinogenesis, Political science, Sustainability, Tumours of the digestive tract Radboud Institute for Molecular Life Sciences [Radboudumc 14], Member state, Human resources, business, Genetics (clinical) |
| الوصف: | Contains fulltext : 245048.pdf (Publisher’s version ) (Closed access) European Reference Networks (ERNs) were founded on the principle that many rare disease (RD) issues are pan-European and any single Member State cannot solve them alone. In 2021, ERNs are already in the deployment stage; however, their day-to-day functioning and realization of their potential are still severely hampered by many challenges, including issues in governance and regulation, lack of legal status, insufficient and unsustainable funding, lack of ERN integration into national systems, endangered collaboration with UK RD experts due to Brexit, insufficient exploitation of ERN potential in RD research, underappreciation of highly qualified human resources, problems with the involvement of patient representatives, and still unclear place of ERNs in the overall European RD and digital ecosystem. Bold and innovative solutions that must be taken to solve these challenges inevitably involve pan-European collaboration across several sectors and among multistakeholder RD communities and in many cases crucially rely on the constructive dialogue and coherent, united decisions of national and European authorities that are based on common EU values. Importantly, unresolved challenges may have a strong impact on the further sustainability of ERNs and their ability to realize full potential in addressing huge unmet needs of RD patients and their families. |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 1868-6001 1868-310X |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::80c9c41a23004296fe04820098ab266cTest http://europepmc.org/articles/PMC7968406Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....80c9c41a23004296fe04820098ab266c |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 18686001 1868310X |
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