The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies

The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

none57During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.noneTalarico R.; Aguilera S.; Alexander T.; Amoura Z.; Antunes A.M.; Arnaud L.; Avcin T.; Beretta L.; Bombardieri S.; Burmester G.R.; Cannizzo S.; Cavagna L.; Chaigne B.; Cornet A.; Costedoat-Chalumeau N.; Doria A.; Ferraris A.; Fischer-Betz R.; Fonseca J.E.; Frank C.; Gaglioti A.; Galetti I.; Grunert J.; Guimaraes V.; Hachulla E.; Houssiau F.; Iaccarino L.; Krieg T.; Limper M.; Malfait F.; Mariette X.; Marinello D.; Martin T.; Matthews L.; Matucci-Cerinic M.; Meyer A.; Montecucco C.; Mouthon L.; Muller-Ladner U.; Rednic S.; Romao V.C.; Schneider M.; Smith V.; Sulli A.; Tamirou F.; Taruscio D.; Taulaigo A.V.; Terol E.; Tincani A.; Ticciati S.; Turchetti G.; van Hagen P.M.; van Laar J.M.; Vieira A.; de Vries-Bouwstra J.K.; Cutolo M.; Mosca M.Talarico, R.; Aguilera, S.; Alexander, T.; Amoura, Z.; Antunes, A. M.; Arnaud, L.; Avcin, T.; Beretta, L.; Bombardieri, S.; Burmester, G. R.; Cannizzo, S.; Cavagna, L.; Chaigne, B.; Cornet, A.; Costedoat-Chalumeau, N.; Doria, A.; Ferraris, A.; Fischer-Betz, R.; Fonseca, J. E.; Frank, C.; Gaglioti, A.; Galetti, I.; Grunert, J.; Guimaraes, V.; Hachulla, E.; Houssiau, F.; Iaccarino, L.; Krieg, T.; Limper, M.; Malfait, F.; Mariette, X.; Marinello, D.; Martin, T.; Matthews, L.; Matucci-Cerinic, M.; Meyer, A.; Montecucco, C.; Mouthon, L.; Muller-Ladner, U.; Rednic, S.; Romao, V. C.; Schneider, M.; Smith, V.; Sulli, A.; Tamirou, F.; Taruscio, D.; Taulaigo, A. V.; Terol, E.; Tincani, A.; Ticciati, S.; Turchetti, G.; van Hagen, P. M.; van Laar, J. M.; Vieira, A.; de Vries-Bouwstra, J. K.; Cutolo, M.; Mosca, M

The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients. It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU

The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies

The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.Pathophysiology and treatment of rheumatic disease

The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU