What are EpiCARE's projects?
EpiCARE is a European Reference Network (ERN). The ERNs are networks involving healthcare providers (medical teams of experts and paramedics) across the European Union, accredited by the European Commission. The first mission of the ERNs is to facilitate discussion between experts on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
This video explains what the European Reference Networks (ERN) are, and how they might support patients and health professionals to identify diagnosis or treatment.
The general objectives of ERN EpiCARE, for better care of patients with rare and complex epilepsies are in line with those of the International League Against Epilepsy (ILAE) Strategy 2030 plan, translated into EU needs. Together with patient advocates working with us, in partnership with the EU chapters of the international patient’s advocacy society for epilepsy – the International Bureau for Epilepsy (IBE) – we also contribute to the implementation in the European Union of the recently published WHO Resolution (WHA73.10) for “global actions on epilepsy and other neurological disorders”. This resolution also offers us the possibility to significantly increase interactions with all other ERNs involved in caring of patients with rare neurological disorders, such as: ERN-RND; ERN EURO-NMD; ERN ITHACA; MetabERN.
The structure of ERN EpiCARE, illustrated below and detailed in the corresponding sections of this website, is designed to reach, in the medium and long run, the following global goals:
- Serve health professionals within the EU as the premier international resource for current and emerging standards and best practice in epilepsy care.
- Support health professionals within the EU and beyond to enhance their knowledge and skills in the prevention, diagnosis, treatment, and care of epilepsy.
- Advocate for epilepsy as a public health imperative.
- Liaise with patient associations and patient advocates
- Promote research and innovation for epilepsy.
After consideration of needs in epilepsy care, the ERN EpiCARE is currently structured in 20 Working Groups (WGs). It is governed by a Board of Members (one representative from each of our 50 members, full and affiliated), represented by an Executive Committee (WG1) composed by established clinicians or researchers with a strong track record in the field of epileptology (Terms of Reference).
Eight WGs focus on issues related to best practices in epilepsy care, reflecting the multidisciplinary care and expertise needed to achieve a global approach both for diagnostics and therapeutic strategies, including the development of scientifically sound clinical trials. Whenever needed a WG can create topic-specific task forces, open to clinicians, researchers and patient advocates wishing to voluntarily contribute to EpiCARE missions.
Eight other WGs focus on best Healthcare and Research policies, including: Education and training policies; Guidelines and Recommendations in partnership with the scientific societies; Support to the development of National networks for epilepsy care, within the EU; Quality of complex Case Discussions (CPMS): Development of an EU-based Registry for rare and complex epilepsies and for best practices in Data sharing; Comorbidities; Fostering genetic research. A Research Council (WG 15) contributes to foster Research in the field, follows the HORIZON EU calls, to provide support and advice to EpiCARE members and beyond epilepsy teams wishing to apply for a research grant.
One WG is dedicated to Nurses and EEG technicians, working at epilepsy monitoring units and departments.
When appropriate, patient advocates are invited to contribute to EpiCARE WGs. Considering the patient needs, both the common ones (equal access to care facilities; social stigma; etc.) and those per epilepsy category, a dedicated group (WG19) works for the largest possible representation of patient advocates at all levels of the network.
The ERN EpiCARE also contributes to several European Union projects: EJ PRD, the ERICA project, ECET, ERDERA, JARDIN…. Each of them has a dedicated website page with more information.
To find out more about the different EpiCARE’s projects, we invite you to browse this section. If you have any question, do not hesitate to contact us.
