Currently gaps exist in the diagnosis and management of the rare and complex epilepsies across the EU. There remains geographical variability in the availability of advanced molecular or metabolic investigation; E-pilepsy has widened the availability of advanced presurgical evaluation but high risk invasive EEG monitoring may still only be performed in limited sites with the appropriate skill mix. Further, there remain knowledge gaps in adult epilepsy practice, where adults with longstanding refractory epilepsy have not had the benefit of the newer diagnostic approach eg genetics. A network for rare and complex epilepsies will reduce the geographical and knowledge gap.
The network is structured through a series of vertical workpackages (core networks); linked by further horizontal workpackages (sub networks) linking diagnostics and therapeutics to enhance patient care. These build on existing networks relevant to the specialised care of individuals with the rare epilepsies eg E-pilepsy, European Epilepsy Brain Bank .