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European Reference Networks: challenges and opportunities

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 st...

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Autores principales: Tumiene, Birute, Graessner, Holm, Mathijssen, Irene MJ, Pereira, Alberto M, Schaefer, Franz, Scarpa, Maurizio, Blay, Jean-Yves, Dollfus, Helene, Hoogerbrugge, Nicoline
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7968406/
https://www.ncbi.nlm.nih.gov/pubmed/33733400
http://dx.doi.org/10.1007/s12687-021-00521-8
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author Tumiene, Birute
Graessner, Holm
Mathijssen, Irene MJ
Pereira, Alberto M
Schaefer, Franz
Scarpa, Maurizio
Blay, Jean-Yves
Dollfus, Helene
Hoogerbrugge, Nicoline
author_facet Tumiene, Birute
Graessner, Holm
Mathijssen, Irene MJ
Pereira, Alberto M
Schaefer, Franz
Scarpa, Maurizio
Blay, Jean-Yves
Dollfus, Helene
Hoogerbrugge, Nicoline
author_sort Tumiene, Birute
collection PubMed
description 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.
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spelling pubmed-79684062021-03-18 European Reference Networks: challenges and opportunities Tumiene, Birute Graessner, Holm Mathijssen, Irene MJ Pereira, Alberto M Schaefer, Franz Scarpa, Maurizio Blay, Jean-Yves Dollfus, Helene Hoogerbrugge, Nicoline J Community Genet Original Arrticle 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. Springer Berlin Heidelberg 2021-03-17 2021-04 /pmc/articles/PMC7968406/ /pubmed/33733400 http://dx.doi.org/10.1007/s12687-021-00521-8 Text en © The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2021
spellingShingle Original Arrticle
Tumiene, Birute
Graessner, Holm
Mathijssen, Irene MJ
Pereira, Alberto M
Schaefer, Franz
Scarpa, Maurizio
Blay, Jean-Yves
Dollfus, Helene
Hoogerbrugge, Nicoline
European Reference Networks: challenges and opportunities
title European Reference Networks: challenges and opportunities
title_full European Reference Networks: challenges and opportunities
title_fullStr European Reference Networks: challenges and opportunities
title_full_unstemmed European Reference Networks: challenges and opportunities
title_short European Reference Networks: challenges and opportunities
title_sort european reference networks: challenges and opportunities
topic Original Arrticle
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7968406/
https://www.ncbi.nlm.nih.gov/pubmed/33733400
http://dx.doi.org/10.1007/s12687-021-00521-8
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