Frequently Asked Questions
Find answers to the most frequently asked questions about EpiCARE, and rare and complex epilepsies.
For better readability, we divided the questions in three parts, one for general questions about EpiCARE or the ERNs, one for clinicians and healthcare professionals, and one for patients and families.
If you have a question that is not answered here, please do not hesitate to reach out using the contact form.
General EpiCARE and ERNs questions
Diseases and conditions are considered rare when they affect 1 person out of 2000. Today, more than 7000 diseases and conditions are considered rare, and they affect around 30 million people in Europe.
Created under the 2011 Directive on Patient Rights’ in Cross-Border Healthcare, European Reference Networks (ERNs) are cross-border networks bringing together expert medical teams and reference centres of European hospitals to tackle rare or low prevalence and complex diseases and conditions that require highly specialised healthcare. ERNs enable specialists in Europe to share learnings and discuss complex patient cases, providing advice on the most appropriate diagnosis and the best treatment. A key principle of ERNs is to let the knowledge travel rather than the patient leading to economies of scale and more efficient use of costly resources.
For a patient’s case to be discussed at a multidisciplinary clinical session involving several members of one (or more) ERN, the patient must be previously investigated by at least one of the medical teams, members of the network. For reasons related to the need for a comprehensive collection and analysis of the clinical data, individual patients or family doctors do not have a direct access to case discussions at an ERN level.
24 ERNs covering all major rare disease groups were launched in March 2017, including 956 highly specialised healthcare units from 313 hospitals located in 26 countries (25 EU Member States plus Norway). Each Network has a Coordinator and the 24 of them are gathered within the ERN Coordinators group (ERN-CG) establishing a common ground on several key technical and organisational aspects of the Networks activities.
The ERN initiative receives support from several EU funding programmes, including the Health Programme, the Connecting Europe Facility and Horizon 2020. EU Member States lead the ERN process: they are responsible for the recognition of centres at national level, they endorse the applications and a Board of Member States is responsible for developing the EU ERN strategy and approving the networks.
Fore more information about the ERNs, you can visit the website of the European Commission.
EpiCARE is the ERN dedicated to rare and complex epilepsies.
Traditionally, for the general public, epilepsy has been treated as a single disease. In fact, even when the first manifestations (epileptic seizures) are the same, a great number of neurological etiologies can generate epilepsy. In all cases, the global outcome (prognosis) depends first of all upon etiology. Treatment choices also depend, up to a certain degree, from the underlying etiology. This is a reason why that a prompt diagnosis, whenever possible, plays an important role.
ORPHANET — the portal for rare diseases and orphan drugs — lists 137 disorders with epilepsy as the predominant symptom.
The EpiCARE network, through its medical teams, aims to deliver full access and utilisation of all available diagnostic tools; to enhance early identification of patients with treatable rare causes of the epilepsies; to facilitate access to specialised care for rare causes; to early and comprehensive pre-surgical evaluation and epilepsy surgery (when indicated); and to foster research on innovative causal treatments in rare and complex epilepsies.
EpiCARE’s members also develop and deliver educational and training programs as well as guidelines and recommendations, in collaboration with the scientific societies in the field : the International League Against Epilepsy (ILAE); the European Academy of Neurology (EAN); the Paediatric Neurology Society – (EPNS)
They actively contribute to clinical research programs and clinical trials for the development of new and safe innovative treatments.
They closely work with patient advocates: to reinforce both a better understanding of the challenges related to diagnosis and treatment of the various epilepsies; to develop and support actions at national and EU level for a full access of all patients to high quality services and healthcare pathways.
Complex epilepsies are those requiring multidisciplinary management through a care pathway or for comorbidity (i.e. another pathology associated to the epilepsy, such as an intellectual deficit, behavioural disorders, metabolic diseases etc.). They can be of known or unknown aetiology.
Several groups of pathologies can be at the origin of a new-onset epilepsy, such as: Structural (brain lesions) that can be congenital (abnormal development of the cerebral cortex) or acquired (anoxic-ischaemic; head trauma); Genetic (that can be inherited or not); Metabolic; Infectious; or due to an Immune disease. In an important number of cases the aetiology can be unknown, despite the realization of all currently available investigations.
Another example of complex epilepsies are the surgically treatable ones, requiring an early pre-surgical evaluation, a high level of multidisciplinary expertise and diagnostic resources (including video-EEG analysis, functional and/or structural neuroimaging).
Rare epilepsies include all the so-called developmental and epileptic encephalopathies, usually the result of a known or not yet characterized, genetic cause or other rare aetiology.
Finally, are considered complex epilepsies all those that resist to available antiseizure medications, particularly after a well-conducted trial of 2-3 drugs.
You can find here a list of the rare and complex epilepsies covered by the medical teams, members of EpiCARE.
EpiCARE’s activities include:
- Cross-borders collaborations between expert medical teams to discuss cases of rare and complex epilepsies and provide advice to the medical center in charge of the patient.
- Generation of Knowledge and Dissemination in the form of scientific publications, guidelines, and research protocols
- Education and training through webinars, development of highly specialized clinical tools and treatment algorithms, support of PhD students
- Development of innovative clinical research projects with the advice and support of the Research Council
- Development and implementation of innovative clinical trials with the advice and support of the European Collaboration for Epilepsy Trials (ECET)
- Close cooperation between different actors: clinicians, patient representatives, other ERNs, national hospital networks for rare diseases…
EpiCARE has 38 full members, 12 affiliated members and 16 collaborating partners.
The network is composed of 42 medical teams working in healthcare provider facilities. Once they join the network, they have the rights and duties to take actively part into the activities of the network, leading to better diagnostics, better treatments and further spreading of knowledge on the rare and complex epilepsies. EpiCARE achieves its goals thanks to communication, clinical, research and educational activities.
To help the interconnected work of all the HCPs members, Pr Alexis Arzimanoglou, representing the University Hospitals of Lyon (HCL), France, is the coordinator of the network since 2019. He is assisted by a Management team, composed of :
- Carolina Ciumas, HCL, epilepsy surgery WG liaison
- Margaux Faure, HCL, projects and administration manager
- Laurène Mathey, HCL, coordination manager
- Nicola Openshaw-Lawrence, GOSH/HCL, e-learning and data manager, CPMS coordinator
- Anne Robert, HCL, communication manager
- Sébile Tchaicha, HCL, research projects manager
The Steering Committee is composed of the coordinator, the chairs of the different working groups, the chair of the EpiCARE Research Council, two Patients advocates (ePAG) and invited members in charge of different missions of the network.
The responsibilities of the Steering Committee include an operational decision-making body, monitoring and implementation of the action plan, feedback to working groups, report and ask feedback to the Board of EPiCARE members, full and affiliated.
The Board of EpiCARE members is composed by one representant of each HCP/medical team member of the network.
The main activities of the network are organized in 16 work groups, divided in 3 categoris : diagnostics modules, therapeutic modules and transversal activities.
A General Assembly, including the members of the Board of EpiCARE, an ePAG representation, the members of the Steering Committee, the coordinators and co-coordinators of the Working Groups is organized once a year
For patients, families, patients associations
The ERN EpICARE is a network of medical teams. As such it is not a legal entity.
A patient cannot be addressed directly to the whole network. He/she needs first to be clinically investigated either by a medical team, full or affiliated member of the network or by another medical team collaborating with one EpiCARE centre (in most of the cases in the patient’s country)
However, for undiagnosed or complex cases the network organizes at least 3 monthly Case Discussion sessions (reserved to medical staff), in which the data collected and analyzed by the EpiCARE centre is shared with other medical teams for advice.
In summary, for your case to be discussed at the level of the whole network your treating physician has first to refer you to a local epilepsy center, collaborating or being a member of the EpiCARE network.
The ERN EpiCARE is not a patient’s association. However, the medical teams members of EPICARE work, both at national and at an EU level, with several patient associations.
The EpiCARE Patient Group (ePAG, European Patient Advocacy Group) is represented at all levels of actions and missions of the ERN. Patient advocates ensure that patient voice is heard and implemented throughout the network.
EpiCARE members are working together to create significant added value to patient care, research, education and training, in close collaboration with Scientific Societies.
The term ePAGS refers to European Patients Advocacy Group. They were created by EURORDIS as the way to include patient associations in the ERNs decision-making processes. ePAGs bring together elected patient advocates and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process. For more information on ePAGs, you can visit Eurordis’s website.
The patient advocates also produce deliverables to support patients and their families and to facilitate communication between them and the healthcare professionals.
The EpiCARE Patient Working Group comprises ePAG (European Patient Advocacy Group), Patient Advocates who are either leaders in rare and complex epilepsy patient organisations from across Europe, or patients themselves.
This group enables EpiCARE patient representatives to work together on common issues, and are involved in all EpiCARE activities.
Members and non-members of EURORDIS are encouraged to apply. If you are interested in becoming an ePAG advocate, please check out EpiCARE’s webpage for ePAGs.
ePAG patient advocates must come from a patient organisation in the EU, and be able to communicate in english.
ePAG advocates must adhere to the EURORDIS Charter of Volunteers. The number of patient advocates per ePAG is determined in collaboration with clinical coordinating teams of the respective ERNs.
For clinicians, healthcare professionals, specialists
The directive 2011/24/EU is intended provides a legal framework within the European Union (EU) to facilitate cross-border care. Article 12 requires the European Commission to support the Member States in the establishment of the ERNs. The process how to become a member of an ERN is clearly defined in the Implementing Acts: a healthcare provider (HCP) wishing to become a member of an ERN will have to pass an assessment process based on the criteria in Delegated Decision (2014/286/EU) Annex II and on the Implementing Decision (2014/287/EU).
To apply for membership, the HCP/Medical teams can only do so during one of the regular calls for applications organized by the Commission.
This assessment will be composed of several steps:
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- The formal support/endorsement by the Member State in which the HCP is based (for further information an interested HCP should approach the relevant MS representative on the Board of Members States of ERNs and ensure they understand and abide by the agreed national process for endorsing HCPs (More information ).
- An evaluation by the ERN of the specific criteria and conditions for applicant providers with regard to the area of expertise
- After passing an eligibility check a technical assessment composed of documentation review, teleconferences and on-site visits will follow.
- It is the Board of Member States that provides the final approval.
The General and Specific criteria applied by the ERN EpiCARE for the evaluation of new applicants can be consulted here.
Find out more on our webpage “Become an ERN member“.
Membership to an ERN implies:
- Availability of medical staff to provide expertise to other centres at an EU level (cross-border advice on the most appropriate diagnosis and the best treatment);
- Regular contribution to advances in the field of rare diseases; Collaborative research; Generation of knowledge and sharing of learnings; Regular publication in peer reviewed scientific journals;
- Regular contribution to patient association activities;
- Regular participation at the Case Patient Management sessions organized by the ERN
- An annual report on clinical and research activities and occasional audits focusing on the contributions of the medical team to the ERN missions.
HCPs, full or affiliated members of an ERN are NOT funded by the Commission.
ERNs provide a unique opportunity to work together in healthcare. The main goal is to support cooperation in healthcare where expertise is scarce and to facilitate access to high-quality diagnosis and medical care including the European added value by working cross border in this field.
Individual experts are welcome to contribute to the ERN EpiCARE activities independently of the status (member or not) of the medical team they are working for.
CPMS is a secure online platform that aims to support ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. To be able to use the platform you must register for an EU login and once this is completed you can then request access to CPMS.
This service is only available to members of the ERN and is not accessible by patients. More information.
Cases discussions are exclusively reserved to EpiCARE members and invited experts. A medical team, full or affiliated member of EpiCARE has the possibility to invite an expert to participate at a case discussion.
If you are a member of EpiCARE and wish to present a case, please contact Nicola Openshaw-Lawrence.
The calendar of the coming case discussions is available here.
EpiCARE’s webinar are accessible to all, but we do ask for registration previous to the event. There is no registration fee.
The calendar for the webinars is on this page, with links to register. You can also subscribe to the Webinar newsletter to get a reminder before each webinar.
Past webinars remain accessible to all after the first live diffusion.
