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
The role of the EEG background activity in pediatric epilepsies
Physicians, even when not specialized in epilepsy, have to face new-onset potentially rare, complex or drug-resistant epilepsies. EEG and Video-EEG (VEEG) are always the first diagnostic tools with history acquisition and clinical examination.
Analysis of the EEG and VEEG recordings guide both the prescription of other diagnostic investigations (neuroimaging, genetic screening) and the first treatment choices. Follow-up and treatment strategies also highly depend upon EEG and VEEG. This course on interactive interpretation of EEG and VEEG patterns is developed specifically for child neurologists, neurophysiologists and pediatricians caring for children with epilepsy
RARE AND COMPLEX EPILEPSIES:
Workshop on the project
Drug discovEry and repurposing to Find a trEAtmenT for Lafora Disease (DEFEAT-LD)
Bologna, 11th October 2023
11:30-11:45
Institutional Greetings (R Lodi, P Bordon,)
Opening Remarks (R Michelucci, F. Bisulli)
PNRR Grant. DEFEAT-LD Project overview (F Bisulli)
Introduction, mechanisms and translational research
Chairpersons: P. Striano, R. Michelucci
11:45-12:15 B. Minassian: LD from disease mechanisms to clinical features
12:15-12:45 M. Gentry: Animal models and overview of treatment strategies
12:45-13:15 J. Serratosa: Treatment of LD: focus on metformin, Myozyme and gene therapy
13:15-13:30 Discussion
13:30-14:30 Lunch (+picture time!)
Biomarkers in Lafora disease
Chairpersons: P. Tinuper, C.A. Tassinari
14:30-15:00 A. Delgado-Escueta: Topic overview and early biomarkers in six stages of LD
15:00-15:15 E. Pasini: EEG characterization
15:15-15:30 S. Mazzone: Neuropsychological features
15:30-15:45 F. Pondrelli: Prognostic value of gene variants
15:45-16:00 Discussion
16:00-16:30 Break
Drug discovery and repurposing to find a treatment for Lafora disease and rare epilepsies
Chairpersons: F.Bisulli, D.M. Cordelli
16:30-16:45 F. Bisulli: Treatment challenges in rare and complex epilepsies
16:45-17:00 L. Vignatelli: Horizon scanning for LD treatments
17:00-17:15 L. Muccioli: The phase II clinical trial with VAL-1221
17:15-17:30 R. Michelucci/M. Tappatà: Preliminary data from the compassionate use of VAL-1221
17:30-17:45 C. Costa: Neurophysiological studies in mouse models of LD
17:45-18:00 G. d’Orsi/M. Carella: High-throughput screening in patients-derived neural stem cells
18:00-18:15 P. Prontera: SINEUPs targeting endogenous and exogenous alpha amylase mRNA
18:15-18:30 G. Damante: CRISPR/Cas9 enhancing alpha amylase gene expression
18:30-19:00 Discussion and Closing Remarks
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 !
ERN EpiCARE leaders Drs. Eleni Panagiotakaki, Marietta Papadopoulou (Lyon) and Carmen Fons (Barcelona) at the frontline of the Alternating Hemiplegia – ATP1A3 symposium to be held in Chicago.
Here is the latest update from the organisers Alfred L. George, Jr., Kathleen Sweadner, Arn van den Maagdenberg:
– Registration Link Deadline for early registration at reduced fee: September 29, 2023
– Abstract Submission Link Deadline for abstract submission: October 6, 2023.
Or, you can call 877-803-7534 and request the AHC Foundation Room Block.
The Hyatt Centric Magnificent Mile will be offering conference attendees discounted rooms from October 26th to 29th. Located at 633 N St Clair St, the hotel is a short walk from campus. Google Maps.
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 !
This intensive 3-day program is designed to provide clinicians/consultants involved in the routine care of people with epilepsy with an update on the latest advances in the investigations, techniques and treatments provided by tertiary centres which specialise in epilepsy. With an emphasis on the clinical implications of the latest research, attendees will leave the course with knowledge of the recent advances in our understanding and treatment of this condition and the ways in which these can be implemented to improve the lives of the patients in their care.
Some basic knowledge of epilepsy and its treatments is useful. It is envisaged that this advanced course will be of interest to clinicians/consultants from a wide variety of medical and allied health professional backgrounds. It will also be useful for any post graduate students involved in epilepsy research who wish to understand the wider clinical context of the disease. With a mix of lectures and case presentations on the program there will be plenty of opportunities for informal discussion and access to the expertise of the multidisciplinary faculty, all of whom are internationally recognised experts in their field.
This course is aimed at:
- Consultants
- Senior specialist registrars in areas such as neurophysiology, neuropsychology, general medicine, paediatrics, learning disabilities, neurology, psychiatry/neuropsychiatry
- Postgraduate students involved in epilepsy research who wish to understand the wider clinical context of the disease.
- Other allied health professionals
Registration fee:
Weekend delegate rate (2 x night accommodation and all meals provided):
- £450 early bird (until 11 August)
- £500 standard rate (from 12 August)
Day delegate rate (includes course evening meal):
- £150 early bird (until 11 August)
- £200 standard rate (from 12 August)
Early bird rates are available until the 11 August 2023 at 17:00 BST. EpiCARE members from outsite the UK will benefit from the Early bird rates beyond August.
CPD accreditation is being applied for.
In-person at the Leonardo Royal Hotel, London City OR live-stream online
Dravet Syndrome is a complex epilepsy. As well as seizures, those affected have learning disability (severe to profound in over 75%), autism, challenging behaviour and difficulties with speech, mobility, feeding and sleeping.
The DSUK Parent/Carer Conference is a unique opportunity for parent/carers, who require practical support and information for all aspects of living with this devastating condition to meet with others who are going through the exact same experiences. It also offers a unique opportunity to meet and to hear directly from expert guest speakers from the UK and around the world. From learning about family rights, to discovering insights about the latest research and treatments; from asking Dravet experts your burning questions to sharing experiences with other Dravet families – our conference provides a friendly environment for furthering knowledge and understanding about living with Dravet Syndrome.
You can view the full agenda and register to attend by visiting www.dravet.org.uk/events/dsuk-conference-parentcarer-day/.
In-person at the Leonardo Royal Hotel, London City OR live-stream online
The medical and scientific understanding of Dravet Syndrome has increased significantly during recent years. We’ve entered an incredibly exciting and hopeful time for the future of Dravet Syndrome, with developments in gene therapy and other treatments that seek to address not only the symptoms of the condition but also its underlying causes.
We’re pleased to invite you to the DSUK Conference Professionals Day – the only scientific meeting in the UK that is dedicated to furthering knowledge about Dravet Syndrome. The conference, chaired by Professor Helen Cross OBE, delivers a packed agenda of leading voices in Dravet Syndrome to enable discussion of the latest updates, news and medical research.
The DSUK Conference Professional Day is CPD accredited by the RCP and the RCPCH.
For further information and to register, please visit www.dravet.org.uk/events/dsuk-conference-professional-day/
It is our pleasure to invite you to register now for the 4th edition of the “In search of lost time” workshop, endorsed by the ERN EpiCARE.
The workshop will discuss in detail two important areas of epilepsy care:
· Neonatal seizures and epilepsies
· Epileptic Seizures in brain disorders
As in its previous editions the workshop will also include:
- a session under the leadership of patient advocates. It is indeed important for the clinicians to better understand to what extent the unpredictability of an active epilepsy is an additional major handicap to the underlying neurological disability due to aetiology
- A session reserved to next-generation experts during which young epileptologists can present their work in the fields of neonatal epilepsies or the one of epileptic seizures as a symptom in brain and other neurological disorder
- A session reserved to advanced therapeutic medical products and updates from Pharma
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 !
