November 26, 2016
e-ENERCA has come to an end reaching its main goal, to provide professionals and patients with e-Health tools to assure the same level of RA services across Europe, independently from the country of practise and the origin of the patient.
e-ENERCA also aimed to promote the recognition of Centres of expertise by the national health authorities necessary for its promotion and its recognition as a European Reference Network (ERN) on RAand to assess the implementation of the new Directive 2011/24/EU.
Although it has not been easy the three platforms foreseen for eRegistry, Telemedicine and eLearning have been developed and implemented in ENERCA website.
Regarding the promotion of the recognition of centres of expertise and analysis of the legal analysis issues arised by the platforms implementation and the analysis of the implementation of the Directive 2011/24/EU, ENERCA has play a key role at the European level by establishing objective criteria based on quantitative indicators for the assessment of centres and by the creation of several legal reports, also applicable for other rare diseases, analyzing the impact of the establishment of ERNs and CoE in different MS.
Finally, in order to ensure network sustainability, a proposal has been submitted to the EC call for ERNs as a result of a joint effort from ENERCA and the European Hematology Association. The proposal is called, EuroBloodNet, and it encompasses both malignant and non-malignant rare haematological disorders. Two main hubs of coordination have been established, and network coordinator will rotate in equal periods of time. Prof Béatrice Gulbis, member of the Executive committee of ENERCA since 2002, has been appointed as coordinator for non-malignant hub and EuroBloodNet coordinator for the second period of time. This governance and coordination structure will ensure visibility of non-malignat disorders, distributed in four subnetworks, three of them covered by ENERCA, plus bleeding disorders, covered by EUHANET, the pilot network for Haemophilia and bleeding disorders.
If you want to know more download the e-ENERCA Final report!