SJD Barcelona Children’s Hospital and the coordination of the ERN EpiCARE

Previously, the coordinating Health Care Provider (HCP) for EpiCARE was the Great Ormond Street Hospital, UK (under the leadership of Pr. H. Cross, 2017-2019) and the Hospices Civils de Lyon, France (Pr. A. Arzimanoglou; 2019-2023). Other areas of rare and complex diseases are covered by 23 more ERNs, co-funded, since 2017, by EU4Health Grants.

Today, the ERN EpiCARE is composed by 50 medical teams of experts, accredited by their respective national authorities and the European Commission. EpiCARE is present in 24/27 EU countries and in Norway. Collaborating members are present in Bulgaria, Greece, Ireland, Switzerland and in the UK.

The European Reference Networks (ERNs) aim to improve care for rare diseases, reduce inequalities in access to the best diagnostic, treatment practices and investigational tools, thus contributing to shape the European Health Care Space.

They involve medical teams from all over Europe who hold discussions on complicated cases, share expertise, generate knowledge and foster research. Discussion of complex cases takes place using a secured platform supported by the EU. For a difficult case to be discussed by experts from different countries, it has to be presented by an accredited ERN medical team. For confidentially reasons, patients and non-ERN members do not have direct access to the platform. The medical teams accredited as members of EpiCARE can be consulted on the network’s website.

The objectives of EpiCARE are:

• Contribute to the development of improvements in epilepsy care, in collaboration with scientific societies and patient advocates.
• Promote and organize educational and training activities, such as webinars, workshops, also debates between EU experts.
• Promote research and clinical trials in the field of rare and complex epilepsies, with the participation of members of the medical teams, and the subsequent dissemination of results and studies.
• Support the development of comprehensive health care policies for patients with rare epilepsies and closely interact with all national health care providers within the EU, to ensure equal access to health care for all EU citizens.

The ERN EpiCARE network, in collaboration with patient advocates, progressively develops, for each rare disease with epilepsy patient leaflets, emergency protocols and information on patient journeys. This is a long process because for many of those diseases, concrete scientific data is lacking. The patient leaflets contain information for both the patient and the family treating physician, and translation into different EU languages is in progress.

If you are a health professional, or a patient with epilepsy or relative of, do not hesitate to consult the website. You can find detailed information about EpiCARE members in all EU countries and how to contact them.