ERN support Ukraine

The European Reference Networks are mobilizing to support Ukraine and its rare disease community.

A common-ERN website has been created to compile information for people affected by rare diseases: www.erncare4UA.eu

EpiCARE also created a dedicated e-mail address for any questions regarding epilepsy: ukraine.epilepsies@epi-care.eu

Find more information and helpful resources: https://epi-care.eu/epicare-support-to-ukraine/

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

Aug
11
Thu
Monthly EpiCARE post-surgical case discussion
Aug 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 !

 

Sep
8
Thu
International Summer school for neuropathology and epilepsy surgery @ University Hospital
Sep 8 – Sep 11 all-day

Course postponed to 2022

The new date for the 11th Summer School for Neuropathology and Epilepsy Surgery in Erlangen, Germany will be September 8-11, 2022.

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 11th 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

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)

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. All approved applications and paid registration fees for the (cancelled) 2020&2021 course will be remain valid. To be considered, applications must be received by April 1st 2022. Details here: INES 2022 Flyer

Monthly EpiCARE post-surgical case discussion
Sep 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
14
Wed
14th International Epilepsy Colloquium @ CHUV Centre Hospitalier Universitaire Vaudois
Sep 14 – Sep 16 all-day
14th International Epilepsy Colloquium @ CHUV Centre Hospitalier Universitaire Vaudois | Lausanne | Vaud | Switzerland

The 14th epilepsy colloquium will take place in Lausanne at the Centre Hospitalier Universitaire Vaudois (CHUV) September 14 to 16, 2022.

The topic is of significant importance – What do we do wrong in epilepsy ?

Through this provocative topic, we wish to discuss all aspects pertaining to suboptimal management of persons with epilepsy, with the aim to underline where and how our community could most effectively promote improved patient’s care.

The main topics will include:​

  • Pre-surgical evaluation
  • Epilepsy surgery
  • When to treat and 1st line asds
  • Informing on and preventing sudep
  • Pitfalls in clinical diagnosis
  • Pitfalls in eeg and mri interpretation
  • Communication with patients and caregivers
  • Management of seizure clusters and status epileptics
  • Prevention and management of epilepsy comorbidities

Eminent experts from all over the world will participate in this endeavor, covering these topics and more

We look very much forward to welcoming you in the Olympic Capital

Professor Philippe Ryvlin and the Organizing committee

This event is endorsed by the ERN EPiCARE.

Register here – special rate for EpiCARE members!

Sep
17
Sat
8th London Innsbruck Colloquium @ Salzburg Congress
Sep 17 – Sep 20 all-day
8th London Innsbruck Colloquium @ Salzburg Congress | Salzburg | Salzburg | Austria

It is our greatest pleasure to invite you to the 8th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures. These meetings have been held every two years since 2007, and the series has become a landmark meeting in the international epilepsy calendar. Due to the COVID-19 pandemic we had to postpone the meeting which was planned for 2021 and are now happy to welcome you back for an in-person meeting in September 2022 in Salzburg.

We have put together an exciting programme with a Top-International Faculty. There have been major advances in the field over the past years regarding better mechanistic understanding and new treatments, as well as clinical strategies.

In addition, it is our greatest pleasure to announce the 2nd European Course on continuous EEG in intensive care. This rapidly emerging field deserves further attention in education and implementation of this valuable diagnostic tool. The course is organised as a Pre-Colloquium Course and you can register separately for the Course only or you take the advantage of registering for both, with a discount.

We look forward to seeing and welcoming you to the 8th London-Innsbruck Colloquium on Status Epilepticus and acute Seizures as well as the Pre-Colloquium Course on continuous EEG monitoring in ICU’s in Salzburg in September 2022!

With best regards,
Eugen Trinka, Simon Shorvon and Matthew Walker

Great news! The organizers have decided to grant every EpiCARE member a reduced rate for the colloquium. I.e. early registration rate until the congress. To benefit from this rate, you can register by sending a mail to status@cmi.at.

See the programme here

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

 

Oct
19
Wed
Conference on Alternating Hemiplegia of Childhood and ATP1A3 diseases @ Conference Centre, The Royal College of Physicians of Edinburgh
Oct 19 – Oct 21 all-day
Conference on Alternating Hemiplegia of Childhood and ATP1A3 diseases @ Conference Centre, The Royal College of Physicians of Edinburgh | Scotland | United Kingdom

‘DEFINING THE FUTURE FOR AHC & ATP1A3 DISEASES’

————————

A 3 DAY UNIQUE EVENT INCORPORATING:

• 10-year anniversary conference commemorating the discovery of the ATP1A3 gene in AHC and ATP1A3 diseases

• The 10th Symposium on ATP1A3 in disease

This 3 Day unique event will be focused on those most impacted by research outcomes; with an opportunity to learn from their experiences and their priorities for future research to improve the research landscape and clinical care.

It will also include an overview of the last 10 years since the gene discovery, alongside current and future research plans for AHC and ATP1A3 Diseases.

—————————–

Where? – Hybrid event – EDINBURGH and ONLINE

Face-toFace VENUE:

Conference Centre, The Royal College of Physicians of Edinburgh,

9 Queens Street, Edinburgh, EH2 1JQ

 

When? – 19th-21st October 2022

The conference will run from Wednesday-Friday (programme to be released shortly), with an evening formal dinner for delegates and speakers on Thursday 20th October (Great Hall, The Royal College of Physicians of Edinburgh)

——————–

BRINGING TOGETHER PEOPLE WITH LIVED EXPERIENCE OF

AHC AND ATP1A3 DISEASES, RESEARCHERS AND CLINICIANS

——————-

To submit an oral or poster presentation, please email: support@ahcuk.org by 31st August 2022. All submissions must use accessible language and style. Prizes for best oral and poster presentation.

——————–

The co-applicants and organising committee of the 10-year conference and 10th Symposium on ATP1A3 in disease are grateful for the generous grant from the European Joint Programme on Rare Diseases to support this event.

Nov
10
Thu
Monthly EpiCARE post-surgical case discussion
Nov 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 !

 

Dec
8
Thu
Monthly EpiCARE post-surgical case discussion
Dec 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 !

 

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

 

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