Abstracts

Rationale: Present our experience in constructing a cross-border network for rare and complex epilepsies at the service of care and research, funded by the European Commission.

Methods: In 2011, the European Parliament approved a declaration that called “to prioritise epilepsy as a major disease that imposes a significant burden across Europe and take initiatives to encourage Member States to ensure equally quality in public healthcare for people with epilepsy…”. That same year the EU Parliament adopted a Directive on the application of patients’ rights in cross-border healthcare and this paved the way for the development of European Reference Networks (ERNs) of Health Care Providers (HCP). In 2013, two pilot projects were funded to test the ERN concept, one covering epilepsy surgery and the other paediatric cancer. Rare and complex epilepsies were also part of another EU funded project (nEUroPed) mainly focusing on Alternating Hemiplegia of Childhood.

Drawing on the richness of their experience with these networks, a group of EU-based leaders, supported by the ILAE, developed an evidence-based argumentation on the reasons to create a stand-alone ERN for rare and complex epilepsies. The ERN EpiCARE was launched in 2017, one of 24 ERNs approved.

Results: Today, the ERN EpiCARE is composed of 43 full and affiliated HCP members and several collaborating partners. We use a referral system for patients and share medical results in a secure platform developed by the EU, aiming to ensure the same level of access to healthcare across Europe: the patient does not need to travel, the information does. Experts in different fields of epileptology meet regularly online to discuss optimal diagnostics and treatment for non-surgical and surgical cases (Fig. 1). EpiCARE members share, compile and assess best practices, disseminate them in the form of publications, clinical guidelines and protocols.

The core actions are developed with the contribution of working groups (Fig. 2), structured in Diagnostic, Therapeutic and Transversal modules. The Research Council facilitates involvement of the network in collaborative research projects. We foster cooperation between different actors: universities; hospitals; patient associations; EU and international scientific societies; cross-ERNs working groups; EU member states. The EpiCARE European Patient Advocacy Group (ePAG) comprises patient advocates who are either leaders in rare and complex epilepsy patient organisations within the EU or patients themselves. We contribute to education and training by organizing workshops, webinars, and by developing practical tools, targeting physicians, associations, families and patients.

Conclusions: The EpiCARE network (https://epi-care.eu/) delivers highly specialized diagnostics and care to improve interventions and outcome in individuals with rare and complex epilepsies. We believe that those pilot networks are the future of care, research and education in rare diseases, bringing major improvement and pavement of solutions for patients.

Funding: Please list any funding that was received in support of this abstract.: The European Reference Network EpiCARE is co-funded by the European Union.