Early and precise electro-clinical and genetic diagnosis (WP3 & WP4) will diminish the delay and allow patients to receive adapted medicine and care and families to have access to genetic counseling.
Through education programs for parents and the general population, as well as the dissemination of new knowledge and improved communication (WP5), the understanding and engagement of general public and parents in the management and the care of EE will be improved through a shared decision between MD and parents.
The active involvement of patient organizations (Ahmed association) through the dissemination activities (WP5) as well as promoting the incorporation of patient’s view and needs into medical decision (SDM) will ensure the rapid implementation of results, immediate benefit for families and better care for patients.
The early identification of an epileptic syndrome will allow the early identification of its co-morbidities, which will allow their early anagement and consequently improve the quality of life (QOL) of patients and their families22.
Increasing the identification of pathogenic variants of AR patients will allow Europeans partners to improve the genetic counseling for MENA-origin families residing in Europe.
