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.
Find out more information here: https://epi-care.eu/
- Geographic focus
- 25 Initiatives