RARE DISEASE NETWORKS, ONE YEAR IN: EU Statement The computer networks are up and running and rare disease patients are starting to enter their data. A year after their launch, the European Reference Networks are looking ahead to what it will take to truly perform their mission: connect patients with the Continent’s top experts, no [...]
ERN-ITHACA Newsletter – February 2018 1. CEF Telecom call ERN-ITHACA received confirmation in February that our application to the CEF telecom call was successful. We will use the awarded funds to employ a new member of staff, based in Manchester, who will provide a helpdesk service for ITHACA Collaborative Portal/CPMS users and also look [...]
ERN-ITHACA Events at European Society of Human Genetics Conference 2018 As many of our members will be in Milan this June for the European Society of Human Genetics Conference, we have scheduled several network meetings to take place over the course of the event. Friday 15th June 7th European Meeting on Rare Disorders of [...]
Position statement from the European Reference Networks (ERNs) Network Coordinators 28 February RARE DISEASE DAY!
Position statement from the European Reference Networks (ERNs) Network Coordinators 28 February RARE DISEASE DAY! As Coordinators of the 24 European Reference Networks (ERNs), we stand together and united with our 900 strong members (healthcare providers) and the patient community, in the fight against rare diseases. Rare diseases are indiscriminate in nature and do not [...]
The network's Launch Meeting was held on Monday 25th September at Manchester Airport Radisson Blu. The successful event was attended by representatives from 31 Health Care Providers and 9 patient/lay groups, providing an invaluable opportunity for clinicians and service user representatives to discuss their expectations of the network and how these can be measured. [...]