In 2011, the European Parliament approved a written declaration that called “on the Commission and Council to prioritise epilepsy as a major diseases 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, e.g. by stimulating the exchange of best practice”. That same year, the European Parliament adopted Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare. As a result, this paved the way for the development of European Reference Networks (ERNs).
In 2013, DG-SANCO (now called DG-SANTE) funded two pilot projects to test the ERN concept, one covering complex epilepsies (coordinated by Prs. Helen Cross -UK- and Philippe Ryvlin -France and Switzerland-) , and more specifically epilepsy surgery and the other paediatric cancer. Rare and complex epilepsies were also part of another EU funded project (nEUroPed) coordinated by the University Hospitals of Lyon (HCL). ERN policy entered into force in 2014 (2014/286/EU). A call for the designation of ERNs to cover the majority of rare and complex diseases followed.Some stakeholders were advocating for very large networks, such as one covering all neurological diseases, while others believed that more focused ERNs would be more effective.
Drawing on the richness of their experience with the epilepsy surgery network, a group of EU leaders in the field of the epilepsies from Austria, Belgium, Finland, France, Germany, Italy, The Netherlands and the UK, formed a steering committee. They worked for nearly 2 years in developing an evidence-based argumentation focusing on the reasons to create a stand-alone ERN for rare and complex epilepsies. The steering committee received strong support from the International League Against Epilepsy (ILAE) and its Regional Board ILAE-Europe, from a group of Members of the European Parliament, led by Brian Hayes and from several patients associations.
The ERN EpiCARE was launched in 2017, as part of the 24 ERNs labelled by the European Commission. Before the Brexit it was coordinated (2017-2019) by Pr. Helen Cross , currently President of the ILAE, from the Great Osmond Street Hospital in London, UK. Starting March 2019, the coordination was entrusted to Pr. Alexis Arzimanoglou from the Hospices Civils de Lyon, France.
The ERN EpiCARE received support by the European Commission for the coordination, management and operational activities (Direct Grant March 2017 – February 2022; Bridging Grant March 2022 – August 2023). EpiCARE obtained 3 other grants by INEA (Innovation and Networks Executive Agency) to fund specific projects – such as the development of a Registry, coordination of the Case Patient Management System (CPMS), interactive e-learning modules in cooperation with the ILAE-ACADEMY.
Since its creation in 2017 EpiCARE organized 6 annual meetings (London in 2018 and 2019; Lyon in 2020; a remote meeting in 2021 due to the COVID 19 pandemic; Lyon in 2022 and Utrecht in 2023) with the participation of representatives from all our members and patient advocates. The Utrecht 2023 General Assembly validated the decision of the EpiCARE Board of Members to transfer the coordination of the ERN, starting September 1st 2023, to the Hospital San Juan de Dios-Hospital Clinic member of EpiCARE in Barcelona, Spain. Professor Arzimanoglou will remain the Coordinator.
Since 2020 EpiCARE is also contributing to the organization by the Italian members of the network, of a scientific workshop, held in Rome, under the generic title “In search of lost time“. The 2020 workshop focused on “Epilepsies in Children and adolescents“, the 2021 workshop mainly focused on clinical trials and targeted therapies; the 2022 one treated the topic: “from epileptogenesis to clinical practice. The 4th Rome workshop to be held the 13th – 15th December 2023, will discuss state-of-the-art in “Neonatal seizures and epilepsies” and on the WHO intersectoral action plan on “epilepsy and other neurological disorders“.
In June 2023 EpiCARE applied for a new grant, expected to fund the coordination and management activities for the next 4 years (September 2023-August 2027).