ERNs COVID-19: Resources, Recommendations & Support

Here is a list of links to relevant resources and support information developed and provided by several ERNs and the EU aimed at fight the COVID-19 outbreak in a coordinate effort. The list and links provided by the ERNs are constantly updated.

  • COVID-19 Clinical Management Support System (CMSS) launched by the European Commission to support doctors, nurses, and other healthcare professionals in hospitals that are currently dealing with COVID-19 cases all over the EU, UK and the EEA countries. This system allows the professionals to communicate easily with colleagues, exchange knowledge, discuss cases and improve training, namely via webinars.
  • ERN-VASCERN. List of Recommendations for patients with rare vascular diseases prepared by the experts from the Rare Disease Working Groups of VASCERN.
  • ERN-EuroBloodnet. List of documents with indications for the clinical care of patients affected by Rare Hematological Diseases produced with the participation of EuroBloodNet members, including language and target (health professionals or patients).
  • ERN-Eye. List on (i) General information on Covid-19 ,(ii) COVID-19 and Rare Eye Diseases, (iii) COVID-19 situation: ERN-EYE Health Care Providers is provided.
  • ERN-RND. List of official websites important for patients and healthcare professionals.
  • ERN-LUNG.  Patient data collection sheet for the network´s experts to gather information regarding patients with rare lung diseases that have contracted SARS-CoV-2 and exchange important info on experiences.
  • METABERN. Recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the Covid-19 emergency.
  • ERN-BOND. List of different initiatives and actions that have been (and are being) implemented at European and Italian levels and also “COVID-19 guidelines and recommendations” have been collected and made available for consultation.
  • ERN ReCONNET. List of all the statements done from organisations and entities related to network and people with connective tissue and musculoskeletal diseases.
  • Endo-ERN. Section has been created that will later become a hub for patients with rare endocrine conditions who need information and for clinicians treating COVID-19 patients with rare endocrine conditions.
  • ERN-eUROGEN. List of several resources and information for patients and clinicians.
  • ERN-ERNICA. Official statement on COVID-19 outbreak.
  • ERN-TransplantChild. List of information in the format of the frequently asked questions related to the transplant recipients and their families as well as to healthcare professionals with proper links to the competent bodies that are making global recommendations at the international level.
  • ERN-RITA. Two surveys are available: Global Survey on COVID-19 and PIDs and IPOPI coordinated a global statement on COVID-19.
  • ERN-EpiCARE. Recommendations prepared by the experts of EpiCARE ERN Steering Committee regarding COVID-19 and epilepsy care.
  • ERN-RARE LIVER. List of information for patients and for physicians.