Search
Close this search box.

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 

EpiCARE General Assembly 2024

In June (17th – 19th) the 7th annual meeting of the ERN EpiCARE will take place at the Hospital Sant Joan de Déu (coordinating HCP) in Barcelona, Spain. Here is the program.  

Members of EpiCARE accredited centers can participate online to any of the sessions, but a registration is nedded using this link

MOOC on 'Health Data Ethics & Regulatory Frameworks in Rare Disease Research'

With the MOOC on ‘Health Data Ethics & Regulatory Frameworks in Rare Disease Research’ you’ll gain essential knowledge through the complex field of rare disease research and feel confident to apply these theoretical concepts in practice. 

From May 6th to June 28th, join us for an enriching learning experience with expert educators on hand to address your queries!

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

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 !

 

Sep
19
Thu
ILAE course: 14th International Summer School for Neuropathology and Epilepsy Surgery
Sep 19 – Sep 24 all-day

Workshop Description
Reliable neuropathological work-up of epilepsy-associated brain lesions represents an important diagnostic value for the surgical management of patients with drug-resistant focal epilepsy. The international classification of epilepsies recognizes a large spectrum of brain lesions as potential predictors of disease progression and treatment response. The 14th International Summer School for Neuropathology and Epilepsy Surgery is designed to enable participants to better recognize and classify various histopathological substrates of drug-resistant epilepsy. Topics related to the diagnosis and treatment of human focal epilepsies will be presented by internationally renowned faculty. Advanced hands-on histopathology training will be offered in small groups led by distinguished tutors who will review and discuss microscopy slides of selected cases with different staining protocols. Participants will also have the opportunity to present their own cases for discussion with the entire group. The workshop has been held in Germany, Brazil, USA and China since 2013, with the endorsement of the International League Against Epilepsy (ILAE).

Learning Objectives of the ILAE curriculum
1.1.1 Demonstrate working knowledge of etiologies for focal and generalized epilepsies in children and adults (Level 1-3) with particular emphasis on hippocampal sclerosis, glio-neuronal brain tumors and malformations of cortical development (see also 1.1.2, 1.1.4 and 1.1.6) 4.1 Demonstrate working knowledge of indications for pre-surgical evaluation (Level 1-3)
4.7 Demonstrate the value and need for multidisciplinary teamwork

Target Audience
Neuro-/Pathologists, Epileptologists, Neurosurgeons & Neurologists, Neuroimager and Basic Researcher

Registration
Please register in advance as room will be limited to 50 participants. No on-site registration available. Applications must be received by April 1st 2024. We urge that you apply as soon as possible to reserve your spot and avoid disappointment.
Applications should include a brief description of your current clinical practice and experience in the field of neuropathology and epilepsy surgery and a short CV.
Please indicate your level of experience in histopathology:
A – experienced, B – beginner, C – non-experienced.
Please send your application to: bluemcke @uk-erlangen.de.
Selected participants will be informed no later than 40 workings days from the application deadline, and will receive all further instructions regarding payment and full registration.
Registration fee: €400

Oct
10
Thu
Monthly EpiCARE post-surgical case discussion
Oct 10 @ 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 !

 

Nov
14
Thu
Monthly EpiCARE post-surgical case discussion
Nov 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 !

 

Dec
12
Thu
Monthly EpiCARE post-surgical case discussion
Dec 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 !

 

Jan
9
Thu
Monthly EpiCARE post-surgical case discussion
Jan 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 !

 

Feb
13
Thu
Monthly EpiCARE post-surgical case discussion
Feb 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 !