European reference Network
- European Reference Network
- Coordinator: Prof Helen Cross, Great Ormond Street Hospital for Children NHS Foundation Trust
- European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe.
- They aim to tackle complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources.
- Project start: 1 March 2017
- Website: https://epi-care.eu
The EpiCARE network seeks to increase the number of seizure free patients in Europe.
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 Epilepsy 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.
Prof. J. Helen Cross
Head of Developmental Neurosciences Programme of the UCL Institute of Child Health and Honorary Consultant in Paediatric Neurology at Great Ormond Street Hospital NHS Trust, London and Young Epilepsy, Lingfield, UK