Epilepsy affects at least 6 million people in Europe. Traditional antiepileptic therapies help between 60% and 70% of those affected to remain seizure free. For patients suffering from refractory epilepsy, the clinical outlook is poor. Traditionally, epilepsy has been treated as a single disease, but these conditions are increasingly viewed as a group of rare and complex diseases. ORPHANET — the portal for rare diseases and orphan drugs — lists 137 disorders with epilepsy as the predominant symptom, however many patients remain undiagnosed and without access to treatment.
The network aims: to deliver full access and utilisation of pre-surgical evaluation and epilepsy surgery; to increase diagnosis of rare causes of the epilepsies; to enhance identification of patients with treatable rare causes of the epilepsies; to increase access to specialised care for rare causes; and to foster research on innovative causal treatments in rare and complex epilepsies.
EpiCARE builds on the work of the pilot ERN E-pilepsy which worked to increase awareness and accessibility of epilepsy surgery, for carefully selected individuals, that effectively used e-tools and multidisciplinary team discussion. The EpiCARE network, which includes active participants from patient organisations, seeks to increase the number of seizure free patients in Europe.