What is EpiCARE?
ERN’s or European Reference Networks are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
EpiCARE is the ERN for all rare and complex epilepsies – which includes r(20) syndrome.
Our CEO Allison Watson is deputy coordinator for the European Patient Advocacy Group (ePAG) for EpiCARE and is heavily involved in the working groups and activities of the EpiCARE ERN.
Referral pathways in the UK
If you are a parent/carer of a child with unexplained or uncontrolled epilepsy, please contact your doctor who can refer your child via the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS).
The service provides a forum for the discussion of difficult epilepsy cases that have presented diagnostic and/or management difficulties and have proven refractory to treatment.
Referral pathways in the EU
If you are an epilepsy patient yourself or a parent/carer of a patient with unexplained or uncontrolled epilepsy, please contact your doctor who can refer you or your child to an EpiCARE ERN centre.
EpiCARE need a referral letter from your doctor describing your/your child’s epilepsy type, cause of epilepsy, possible epilepsy syndrome, latest investigations (EEG, video-EEG, all brain imaging results, genetics).