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International Epilepsy Day 2024

February 12th is International Epilepsy Day. At ERN EpiCARE we are committed to supporting  individuals on their own unique epilepsy journey. 

Find out more about the World Health Organisations Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (WHO-IGAP 10 year roadmap)

The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks,  and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access
timely and adequate specialised healthcare. 

Read the open letter from the rare disease community here 

9th London-Innsbruck Colloquium

 

The 9th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures will be held on the 8th – 10th April 2024,  in London, UK. 

To find further information and register to attend please visit the London-Innsbruck Colloquium website.

Calls for collaborative genetic research

 The Genetic Research workgroup is sharing opportunities of collaborative calls for European series of patients carrying variants in already known genes, to facilitate this type of studies by connecting several centers across Europe involved in the study of genetic epilepsies.

Have a look at the calls for collaborative genetic research here, and contact Sébile Tchaicha, Research project manager, if you have any question !

EpiCARE Research Council

Supporting research on rare and complex epilepsies in one of EpiCARE’s priorities.

To that effect, the Research Council is sharing some open funding calls opportunities on this webpage.

Do not hesitate to have a look at the calls, and contact Sébile Tchaicha, Research project manager, if you have any question !

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

Universal

Accessibility

To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.

Heartbeat

Developing treatment

To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.

Shapes

Awareness

To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.

Book

Education

To enhance educational activities and training opportunities across Europe by interchange across the network.

Rocket

Collaborative research

To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.

Agenda

Mar
14
Thu
Monthly EpiCARE post-surgical case discussion
Mar 14 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Apr
4
Thu
European Workshop for a multidisciplinary view on raregenetic neurodevelopmental disorders
Apr 4 – Apr 5 all-day

The EU Reference Network ITHACA announces the 2-day European workshop on the multifaceted care and research of genetic neurodevelopmental disorders (NDD). This meeting will be fully supported by the E uropean Union to enhance cross-border and multidisciplinary knowledge exchange and collaboration.

Attendance is free of charge. However, please register timely because the total number of participants it can host is limited to 250.

The steep increase in genetic diagnoses has implications for many clinical areas and directions of pre-clinical research. EuroNDD 2024 will therefore cover the following six themes:

  1. genes & pathways
  2.  mechanisms of disease, model system & translational pre-clinical work
  3. applied & emerging therapies
  4. diagnostics
  5. polyhandicap – profound intellectual and multiple disabilities (PIMD)
  6. ethical, legal and psycho-social aspects

Aligned to the six themes, we will have plenary & parallel lectures, abstract presentations & poster pitch presentations. The parallel session will be followed by a selection of dedicated round tables.

All our registrants will get informed by the end of December about the roundtables they can select from.

The workshop program will stimulate a broad exchange between members of various disciplines such as geneticists, paediatricians, neurologists, psychiatrists and all other specialists involved in care and scientist in basic and translational research involving patients with neurodevelopmental disorders.

The call for abstract runs until November 30th. For more details, please check: Abstract Submission – ERN ITHACA (ern-ithaca.eu)

Registration runs from 15 November until 22 December 2023, please check: Registration and Travel – ERN ITHACA (ern-ithaca.eu)

Apr
8
Mon
9th London-Innsbruck Colloquium on Status epileptics and Acute Seizures
Apr 8 – Apr 10 all-day

The 9th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures will be hosted in London in April 2024.

Further information and registration links can be found on the Colloquium website.

Apr
11
Thu
Monthly EpiCARE post-surgical case discussion
Apr 11 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

May
9
Thu
Monthly EpiCARE post-surgical case discussion
May 9 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Jun
13
Thu
Monthly EpiCARE post-surgical case discussion
Jun 13 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Jul
11
Thu
Monthly EpiCARE post-surgical case discussion
Jul 11 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Jul
21
Sun
20th Advanced San Servolo Epilepsy Course
Jul 21 – Aug 1 all-day

Course Directors: Fernando Cendes (Brasil) and Carlo Marras (Italy)

Aim of the Course is to teach attendees to: (1) utilize basic knowledge to study patients candidate to epilepsy surgery with imaging and electrophysiological techniques; (2) understand the nature and evolution of surgically remediable epilepsies; (3) recognize and select patients with drug-resistant epilepsy that may benefit of surgical treatment; (4) plan neurophysiological, video EEG and imaging investigations and interpret their results in the clinical context; (5) manage an Epilepsy Surgery team. The Course is targeted to neurologists, neuropediatricians, neurophysiologists, neuroradiologists, neurosurgeons and clinical neuroscientists interested in the pathophysiology, diagnosis and management of pharmacoresistant epilepsies, and in the development of epilepsy surgery programs. The Course is based on frontal teaching, practical sessions, special group activities and presentation of clinical cases. Attendees will be grouped in small teams to prepare a research project on pharmacoresistant epilepsy under the supervision of two faculty tutors.

Faculty: Fernando Cendes (Br), Carlo Marras (I), Albert Becker (D), Luca De Palma (I), Vadym Gnatkovsky (D), Jorge Gonsales Martines (US), Christoph Helmstaedter (D), Hans Holtausen (D), Sam Lathoo (US), Aileen McGonigal (Aus), Michele Rizzi (I), Laura Tassi (I), Kette Valente (BR), Anna Vaudano (I), Sara Baldassarri (F), Sandor Beniczky (DEN), Stefan Rampp (D), Helen Cross (UK), Rita Garbelli (I), Andy McEvoy (UK), Veronica Pelliccia (I), Domenico Tortora (I).

Registration fee: 3.300 € in single room; 2.800 € in shared two-bed room (w VAT and bank fees). The registration fee includes:

  • accommodation from July 21st to 31st (11 nights)
  • full board and coffee breaks for the entire duration of the Course
  • access to the Course apps and to the Venice International University facilities

Application forms (available on ILAE website) should be sent to the attention of Valentina Guarino at epilepsysummercourse@univiu.org, fax +39-02-700445211.
The application deadline is January 15th, 2024.
A limited number of fellowships that cover registration and local expenses (not travel costs) will be available. Fellowship requests must be submitted by December 31st, 2023.

Aug
8
Thu
Monthly EpiCARE post-surgical case discussion
Aug 8 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Sep
12
Thu
Monthly EpiCARE post-surgical case discussion
Sep 12 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !