EpiCARE: a European Reference Network for rare and complex epilepsies
The European Reference Networks (ERNs) were launched in 2017. They involve more than 900 highly specialised health care teams, located in more than 300 hospitals in 26 European countries. The main mission of the ERNs is to help patients with rare or low-prevalence complex diseases.
A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5 000 and 8 000 of rare diseases affect daily life of around 30 million people in the EU.
The ERN EpiCARE brings together highly specialized health centres (38 full members and 12 affiliated partners) in 26 European countries with expertise in rare and complex epilepsies.
If you are a healthcare professional and would like to refer a patient to us, or if you are a patient yourself, or a family member of a patient, please get in touch via our contact page.
The objectives of the EpiCARE network
Accessibility
To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.
Developing treatment
To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.
Awareness
To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.
Education
To enhance educational activities and training opportunities across Europe by interchange across the network.
Collaborative research
To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Agenda
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The aim of the 3 year cycle EPIPED Treatment is to reduce the geographical and knowledge
gap by providing neurologists and child neurologists involved in epilepsy care the opportunity
for a regular update on best treatment practices. The concept of EPIPED is based on a 3 year
cycle of independent annual training courses , developed specifically for child neurologists,
physicians and epilepsy nurses caring for patients with epilepsy.
A limited number of plenary interactive sessions cover different aspects of treatment
strategies in children with all types of epilepsies, particularly the rare and complex ones.
Topics treated are related to pharmacology, pharmacodynamics, pharmacokinetics, genetics,
analysis of AED trials, design of clinical trials, pre surgical evaluation, optimal choice of AEDs,
review of existing guidelines (ILAE, NICE, other), data on ketogenic diet, neurostimulation,
indications for resective and palliative surgery, pharmacological treatments other than with
AEDs, update on the development of targeted therapies.
This link gives you access to the full program of the 3 year cycle.
An important number of interactive modules allow participants, limited to 10 15 per group, to
discuss with experts regarding the best clinical practices and therapeutic strategies.
Participants, limited to 40 45, are offered the opportunity to also bring their own clinical cases
for discussion of optimal treatment approaches. This educational activity is addressing the
corresponding learning objectives of the ILAE curriculum (Blümcke et al 2019)
The Neuroscience Department of Bambino Gesù Children’s Hospital – IRCCS, Rome – Italy with the endorsement of International League Against Epilepsy (ILAE) – Europe, the European Reference Network on Rare and Complex Epilepsies (EpiCARE), and Italian Chapter of ILAE (Lega Italiana contro l’Epilessia – LICE) is presenting the educational initiative – “Drug Resistant Epilepsies – 10th International Residential Course” that will take place in Tagliacozzo (AQ) – Italy.
The Course is planned from 30 April – 6 May 2023
This course is clinically – oriented, targeted to specialists at the second and third level of epilepsy care and focused on comprehensive aspects of diagnosis and treatment of children and adults with epilepsy. It also includes the basic sciences in clinical epileptology issues, and comprehensive care of patients with epilepsy.
The faculty consists of leading International epileptologists. The faculty members give lectures and conduct interactive case discussions and/or tutorials on relevant aspects of epileptology. The working groups are supposed to be a relevant part of the course.
Specialists in neurology, psychiatry, neuropsychiatry, paediatric neurology, paediatrics, clinical neurophysiology and psychology are welcome to apply.
The course is limited to a maximum of 36 applicants to allow an optimal level of interaction with the faculty members.
Applicants should submit together with the application form, an updated CV, a short abstract with a case report to be discussed during the course, and a recommendation letter signed by the head of department or head of research lab.
Registration fee: 1.400 Euro + VAT (22%). It includes accommodation in twin room on full board basis (single supplement will be charged separately), social events, return transfer to Rome airport at scheduled times and access to all the educational activities (lectures, tutorials, case discussions, working groups).
Bursaries will be granted to a limited number of applicants selected among those who will fulfill the following requirements:
– Age under 40 years at the time of the Course (April 30, 2023)
– CV and short case report
(bursary’ recipients will be accommodated in double rooms only)
It is with honor and pleasure that I invite you to join the 28th Biennial Congress of the European Society for Pediatric Neurosurgery (ESPN), which will be held in Rome, Italy, from May 7th to May 10th, 2023. The meeting will be held in the true heart of Rome, few steps from the main historical sites of the “eternal city” . Hot topics will be the ones of extensive large interest in practice and debates including Posterior Fossa Tumors, Craniosynostoses, Hydrocephalus. A joint venture has been estabilished with the Brazilian Society for Pediatric Neurosurgery, with which a round table will be organized on the management of non lesional epilepsy and with the Indian Society for Pediatric Neurosurgery, again with a dedicated round table discussion, this time on Complex Congenital spine anomalies. But above all I deeply hope we will enjoy together discussions and places in the friendship climate which characterize since its constitution our Society. Main scientific sessions with invited lectures and full free presentations will be flanked by oral poster presentations, and prizes for the best one each will be awarded.
With the clear feeling that all of you will represent an exchanged inspiration , I look forward to meeting as many as possible of you here in Rome
Prof. Dr. Gianpiero Tamburrini
ESPN President 2021-2023
The ECCN 2021 was cancelled, but a day Congress on the above date will be organised online!
It will be free to attend but pre-registration is required ( see below)
PROVISIONAL PROGRAM EMEAC DIGITAL DAY OCT 26
9.00-10.15 am CEST Meet Your Executive Committee
10.15-11.15 am CEST General Assembly
11.15-11.30 am CEST break
11.30 am-12.30 pm CEST ORAL COMMUNICATION ( 4 sessions in parallel)
1-Epilepsy / 2-Nerve conduction and sensation/ 3-Theoretical analyses/4- Miscellaneous
12.30 pm-1.30 pm CEST Lunch
1.30-3.15 pm CEST HIGHLIGHT POSTERS ( 4 sessions in parallel)
1-Therapeutics- Auditory and Autonomic- Dystonia-DBS / 2-EEG-Epilepsy / 3-IoM-NMD / 4- Nerve conduction-Miscellany-motor control
3.15-3.30 PM CEST break
3.30-4.15 pm CEST EBRA invited presentation
4.15-5.00 pm CEST Invited lecture
More information and registration here.
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
“Drug-resistant epilepsy in the 21st century: From molecular mechanisms to precision therapies” will take place on Tuesday, 20 June 2023 in Prague, Czech Republic.
This exciting and unique one-day meeting will introduce and discuss in detail all the major developments including current clinical indications for Drug-resistant epilepsy in the 21st century. A broad faculty of international experts will bring you up-to-date with the history, practice and future developments in the rapidly developing field of drug-resistant epilepsy.
The concept of drug-resistant epilepsy is in motion. What started as a simple definition of medically intractable seizure disorder has morphed into a mosaic of conditions with various ages at onset, clinical presentations, genetic etiologies and increasingly of therapeutic options.
Drug-resistant epilepsy is no more a single disorder but a multitude thereof. The originally clear-cut boundaries between “genetic” and “structural” epilepsy dissolve and re-organize themselves around specific genes and genetic variants that participate in the formation of structural and functional abnormalities of brain cortex.
The symposium preceding EPNS Congress 2023 in Prague will guide you through the complex phenotypes and clinical presentations of patients with drug-resistant epilepsy. You will see how patient-derived genomic and phenotypic data contribute to the formation of relevant pre-clinical models that enable us to analyze the pathophysiological mechanisms of drug-resistant epilepsy. Through the improved understanding of epilepsy pathogenesis we will introduce novel approaches to the individualized targeted therapy of drug-resistant epilepsy and the new vistas for patient care and management.
This symposium is suitable for neurologists, paediatric neurologists, epileptologists, neuophysiologists, neuroscientists, radiologists, neurosurgeons, allied health professionals, medical and allied health students.
SAVE THE DATE/Abstracts welcome: EPNS Congress 20-24 June 2023> Congress Center Prague
Welcome to the 15th Congress of the European Paediatric Neurology Society (EPNS) with the main highlight “From genome and connectome to cure”. We invite you to see how the latest trends in understanding pathophysiology of neurological diseases are being implemented in clinical practice. Our field has traditionally focused on precise diagnostics; however, curative treatments were unavailable for a long time. Today, this trend is changing rapidly and novel therapeutic options in our field have brought hope to many families of children even with the most severe neurological conditions.
Learn more and SUBMIT your ABSTRACT (closes 31 December 2022): https://epns-congress.com/
Watch the video, less than 2 minutes: https://youtu.be/tEn8bSepHMI
Any questions, we would be happy to hear from you: info@epns.info
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
