Strengthening the links between EpiCARE and existing, or under development, national epilepsy networks and pathways for optimal epilepsy care is one of our priorities.
The governance structure of ERN EpiCARE that facilitates, pooling and sharing knowledge, fostering research and innovation, as well as the discussion on rare or low prevalence complex epilepsies is now in place. To reap all benefits for patients, effective mechanisms to connect EpiCARE medical teams with national health systems need to be developed.
The National Networks WG aim is to reinforce building national/regional epilepsy care pathways to ensure timely referral to the right level of care, systematic follow-up, awareness of treatment options and self- care, good communication between the different actors and flexible consultation possibilities including national case discussions before referring the case to the ERN-level discussions. National networks need also to include peer support to reinforce care and a service plan, where appropriate.
Our upcoming tasks are:
Our actions also take into consideration the ILAE-IBE recommendations for an integrated approach to «epilepsy and other neurological disorders» (WHO iGAP) and contribute to actions taken at the level of the EU member states, within the frame of the Direct-Action grant, JARDIN, funded by the Commission.
June 2025. Salzburg (Austria). Reetta Kälviäinen. Can you summarize for us the main conclusions of the study you performed in Finland on healthcare pathways for better care of patients with epilepsy?
June 2025. Salzburg (Austria). Katarzyna Kotulska-Józwiak. How do you see in the coming the collaboration between national reference networks for epilepsy care with those centres acknowledged as members of EpiCARE?
If you are interested to voluntarily contribute to this WG activities, please use the contact form to let us know.
