Better futures for young lives with epilepsy and associated conditions

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European Reference Network on rare and complex epilepsies

Working with patients with rare, low prevalence and complex diseases, the EpiCARE network seeks to increase the number of seizure free patients in Europe.

EpiCARE is a European Reference Network (ERN) coordinated by Professor Helen Cross for GOSH, which was launched in June 2017.

Background

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.

One of 24 approved ERNs on rare disorders, EpiCARE has 26 members, spanning 13 countries. Aimed at improving access for patients to diagnostic and therapeutic expertise, we hope these networks will eliminate the need to travel for better care because complex cases will be discussed with the multidisciplinary experts through the network.

EpiCARE will develop and deliver highly specialised diagnostics and care to improve interventions and outcome in individuals with rare and complex epilepsies. Collecting common outcomes through specific disease registries will enhance optimal management in these rare conditions. Although the primary aim of the networks is clinical, a key part will be the development of registries, and ultimately research and clinical trials.

The EpiCARE network aims to:

  • deliver full access and utilisation of pre-surgical evaluation and epilepsy surgery
  • increase diagnosis of rare causes of the epilepsies
  • enhance identification of patients with treatable rare causes of the epilepsies
  • increase access to specialised care for rare causes, including the development of novel therapies
  • foster rersearch on innovative casual 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.

To learn about the impact EpiCARE has on young people living with epilepsy across Europe, please watch this video below.

Read more about our other research projects

Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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